Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Interpreting Blood Work


borst

Recommended Posts

borst Newbie

Hi, new member here.

I've been trying to tackle my health issues for about 4 years now with no definitive answer. This is my history that i typed up for my new physician that i'm seeing (trying to seek a second opinion). I tried to make it as concise as possible but i have a complicated history.

2001

- Went to family doctor in with symptom of bright red blood on tissue.

- Had Upper GI series done

- Diagnosed with duodenal ulcer (even though there were no other visible symptoms)

- Underwent HP-PAC treatment

- Blood on tissue intermittantly after, did not think much of it

December 2004

- Came down with sinus infection

- Went to walk-in clinic, prescribed a week long dosage of antibiotics, ibuprofen and anti-inflammatory nasal spray

- During treatment, began having waking morning bowel urgency and loose stool. (this morning urgency has occurred daily without relief for 3 years)

- Blood on tissue became more frequent

- Saw doctor who performed digital exam and then referred to GI specialist to investigate the rectal bleeding.

- Before appointment with GI specialist, saw family doctor who decided to do another upper GI series. Also had liver function test, CBC, abdominal x-ray as well as Gastrin test. All came back normal.

- Found Gastric ulcer through Upper GI test, and put on HP-Pac again

- During treatment, had severe episode of diarrhea, lasting 2 days, could not keep any food down.

- Went to emergency room, given fecal collection kit to test for parasites.

- April 2005, had unexplained weight loss of at least 15 lbs.

- GI specialist in May 2005, underwent sigmoidoscopy, looked normal. Doctor suggested bleeding likely due to fissure. Did not address other gastro. concerns. Seemed dismissive

- Went back to family doctor who decided to order Lower GI series; result: colon was imaged well, and looked normal.

- Doctor began to suspect anxiety as probably cause.

April 2007

- Had a week long episode of stomach flu like symptoms, starting with slight fever, chills, and then week of diarrhea. Unable to eat much of anything.

- Mid April, during exams, started feeling off-balance when standing, slight lightheadedness. Has been constant with no pattern since then. Doctor ordered CBC, came back normal.

- During summer, had another episode of unexplained weight loss of more than 15lbs. Doctor ordered thyroid function test which came back normal. Again, attributed symptoms to likely anxiety issues.

Current symptoms/concerns:

- Continued daily episodes of morning bowel urgency, usually loose stools. Occasionally, there is first a semi-normal stool, followed minutes later by much looser/watery stools. Less frequently, there is visible large amounts of mucus. As well, colour and form of stool at times abnormal; sometimes very light, sometimes contains parts that are almost black. As well, appearance of undigested food present sometimes. Blood on toilet paper as well as streaked on stool frequent.

- Through out rest of day, there is instances of mild discomfort in abdomen, and under right ribcage.

- Constant feeling of off-balance when standing, sometimes severe, sometimes slight.

- Frequent episodes of sore radiating foot pain at night in bed, about 3-4 nights a week.

- Still unsure of reasons for episodes of unexplained weight loss.

Anyway, the first thing my new physician wanted to do was run some general bloodwork as well as a celiac panel. I got the results back today:

Celiac Panel

- Gliadin IgA ABS = 26 (ref range: <20 KEU/L)

- Gliadin IgG ABS = 20 (ref range: <20 KEU/L)

- Transglutaminase IgA = 17

(under reference range it says <20 = negative, 20-25 = borderline, >25 = positive)

So my Glidin IgA is positive, my Gliadin IgG borderline, and my Transglutaminase IgA looks negative.

My doctor said I may have a gluten sensitivity but not "full blown Celiac". What do you guys think?

The rest of my bloodwork showed some spikes as well..

- Magnesium = 1.08 (ref range: 0.65-1.05mmol/L)

- Sodium = 146 (ref range: 135-145)

- Potassium = 5.2 (ref range: 5.2)

- Hemoglobin = 174 (ref range: 135-170g/L)

- Hematocrit = 0.51 (ref range: 0.38-0.49 l/l)

- RBC = 5.82 (ref range: 4.2-5.70)

The bloodwork also included a random glucose test, calcium, vitamin b12, Ferriton, sTSH, T4 Free, Free T3, GGT, AST, Alkaline Phosphatase, all came back within normal range.

I'm getting a referral back to the same gastroenterologist that i had before, hopefully will get some more answers this time

Any advice/suggestions/insight would be appreciated.

Thanks

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AndreaB Contributor

I just skimmed this as I've got to get my kids lunch.

Looks to me like you need to go gluten free. The bloodwork is borderline, but who needs more damage to occur before going on the diet. I don't know if you want to go through a biopsy or not or other tests you'd want done. You need to remain on gluten til whatever testing is done.

With the symptoms you have it also sounds like celiac.

Link to comment
Share on other sites
borst Newbie
I just skimmed this as I've got to get my kids lunch.

Looks to me like you need to go gluten free. The bloodwork is borderline, but who needs more damage to occur before going on the diet. I don't know if you want to go through a biopsy or not or other tests you'd want done. You need to remain on gluten til whatever testing is done.

With the symptoms you have it also sounds like celiac.

Thanks for the reply..

I don't foresee getting in to see the specialist for at least a couple months (long wait times here in Canada) so would it be okay to go gluten-free for a little while and then if the specialist wants to do a biopsy, then i could go back on gluten?

Link to comment
Share on other sites
AndreaB Contributor
Thanks for the reply..

I don't foresee getting in to see the specialist for at least a couple months (long wait times here in Canada) so would it be okay to go gluten-free for a little while and then if the specialist wants to do a biopsy, then i could go back on gluten?

I wouldn't recommend it as biopsies are hit and miss as it is.

If your biopsy is positive it would be definate. Bloodwork is not definate and misses a lot of people. The diet is the best 'test'. If the biopsy is negative it doesn't necessarily mean you don't have celiac or gluten intolerance.....just that the spots of villi looked at weren't damaged.

Link to comment
Share on other sites
borst Newbie
I wouldn't recommend it as biopsies are hit and miss as it is.

If your biopsy is positive it would be definate. Bloodwork is not definate and misses a lot of people. The diet is the best 'test'. If the biopsy is negative it doesn't necessarily mean you don't have celiac or gluten intolerance.....just that the spots of villi looked at weren't damaged.

Thanks again..

so from the sounds of it, it's looking likely that i have gluten sensitivity?

Link to comment
Share on other sites
AndreaB Contributor
so from the sounds of it, it's looking likely that i have gluten sensitivity?

I would say that you most probably have gluten sensitivity, and more than likely celiac.

Your history seems to be pointing that direction.

Some people have more going on than just celiac/gluten sensitivity so if symptoms don't improve on the gluten free diet then you'd need to continue digging for answers. You will have ups and downs but in general things improve dramatically as you heal.

Link to comment
Share on other sites
borst Newbie
I would say that you most probably have gluten sensitivity, and more than likely celiac.

Your history seems to be pointing that direction.

Some people have more going on than just celiac/gluten sensitivity so if symptoms don't improve on the gluten free diet then you'd need to continue digging for answers. You will have ups and downs but in general things improve dramatically as you heal.

Thank you,

my other fear is Crohn's as I've heard that elevated IgG levels can mean other gastrointestinal disorders? this is one instance where i'm hoping for Celiac.

Going on a gluten-free diet looks daunty, but i think with some effort and support ( i have a great girlfriend who's willing to go through it all wiht me) then i should be able to do it.

I guess my biggest fear now is that i WON'T get better on the diet and it'll be something more serious :(

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AndreaB Contributor
I guess my biggest fear now is that i WON'T get better on the diet and it'll be something more serious :(

The gluten free diet will help tremendously, even if something else is going on you'll see improvement and start to feel a little better.

Cross that bridge when it comes. MOST people do great on the gluten free diet and don't have other things that they need to worry about.

It would be good to rule out Crohn's as well.

That's great that you have a girlfriend who is willing to help you with this. That is one blessing for you right there. :)

Take some time now to learn more about the gluten free diet and the transition will be easier.

Link to comment
Share on other sites
borst Newbie
The gluten free diet will help tremendously, even if something else is going on you'll see improvement and start to feel a little better.

Cross that bridge when it comes. MOST people do great on the gluten free diet and don't have other things that they need to worry about.

It would be good to rule out Crohn's as well.

That's great that you have a girlfriend who is willing to help you with this. That is one blessing for you right there. :)

Take some time now to learn more about the gluten free diet and the transition will be easier.

Thanks once again

I decided to take the plunge and go gluten-free and see how I respond. I started off last night with a gluten-free pizza from a local pizzeria. Not really the healthiest choice i know, but it was more symbolic than anything I guess.

I was wondering about how diligent i should be concerning Non-foods.. I've read posts here about gluten in shampoos, toothpaste, washing machine detergent, etc?

Thanks

Link to comment
Share on other sites
AndreaB Contributor
I was wondering about how diligent i should be concerning Non-foods.. I've read posts here about gluten in shampoos, toothpaste, washing machine detergent, etc?

Toothpaste (and I'd say handsoap) is a must to be gluten free.

As far as other personal care products, that's a personal decision. Some are sensitive to the gluten ingredients in personal care products, some are not. For my family, I opted to be gluten free in everything, even though we don't have bad reactions.

Also you girlfriend will need to brush her teeth before kissing you as that could also make you sick.

Link to comment
Share on other sites
borst Newbie

Thanks, can you recommend a gluten-free toothpaste and handsoap? and even shampoo?

Link to comment
Share on other sites
AndreaB Contributor

Dove products are good. I've heard that some crest toothpaste is gluten free. I use Tom's of Maine or Jason's which are more expensive.

I don't kow what products you have in Canada so I can't be of much help there.

Another poster pm'ed me a gluten free list to give my brother. It has a lot of foodstuff and personal care stuff on there. Again, I don't know how applicable it will be for you in Canada. It does list a couple toothpastes on it.

Link to comment
Share on other sites
borst Newbie
Dove products are good. I've heard that some crest toothpaste is gluten free. I use Tom's of Maine or Jason's which are more expensive.

I don't kow what products you have in Canada so I can't be of much help there.

Another poster pm'ed me a gluten free list to give my brother. It has a lot of foodstuff and personal care stuff on there. Again, I don't know how applicable it will be for you in Canada. It does list a couple toothpastes on it.

Thanks again! So dove soap, shampoo, etc should be gluten free?

i think i downloaded that list, but yeah alot of them are specialty ones not available here in Canada.

How stringent should the brushing teeth before kissing thing be? lol.. like only if she's eaten something with gluten?

Link to comment
Share on other sites
AndreaB Contributor
How stringent should the brushing teeth before kissing thing be? lol.. like only if she's eaten something with gluten?

After eating something with gluten, yes.

I pm'ed you the list of products.

Link to comment
Share on other sites
borst Newbie
After eating something with gluten, yes.

I pm'ed you the list of products.

Thanks definitely will help...

i guess its time to go shopping :P

Do you think i should cut out dairy as well for now?

Link to comment
Share on other sites
mamabear Explorer

I read your posts and I am more concerned that you may have inflammatory bowel disease. The antibody levels are not impressive for celiac disease, and I didn't see if an endomysial antibody test was done or not. The tissue transglutaminase antibody and endomysial antibody are now considered the appropriate screening antibodies for celiac. As to the positivity of the antigliadin, it MAY represent gluten sensitivity, but there are no guidelines established for this concept. I for one believe it to be true. That you have mucousy,bloody stools is a concern for IBD. Perhaps you could handwrite a letter to the GI and see about an earlier appointment?? I am not familiar with Canadian medicine, so I don't know if that would help or not. Good luck on your path to diagnosis,health and healing.

Link to comment
Share on other sites
AndreaB Contributor

I would for 6 months anyway. It will help with the healing process. If your intestines are in bad shape you may need to be off for closer to a year.

I have a recipe thread I've started I can direct you to that has gluten free, dairy free, egg free and mostly soy free recipes. You could also click on my user name and click on show members topics, if you want to see what's listed there. Cashews are used a lot to make sauces and cheeses to replace dairy. I use coconut oil to replace butter. We don't drink milk but I think I have a recipe in that thread that goes through making rice milk as well as a couple others.

You may experience withdrawals symptoms for both gluten and dairy. They are powerfully addictive foods. Staying busy and having a good standby replacement will help a lot.

Link to comment
Share on other sites
borst Newbie

Well that would certainly be not good... I thought mucous and bloody stools was also a symptom of Celiac? As well, my barium enema had shown normal when i had that done. (i know colonoscopy is more accurate to screen for IBD)

I read your posts and I am more concerned that you may have inflammatory bowel disease. The antibody levels are not impressive for celiac disease, and I didn't see if an endomysial antibody test was done or not. The tissue transglutaminase antibody and endomysial antibody are now considered the appropriate screening antibodies for celiac. As to the positivity of the antigliadin, it MAY represent gluten sensitivity, but there are no guidelines established for this concept. I for one believe it to be true. That you have mucousy,bloody stools is a concern for IBD. Perhaps you could handwrite a letter to the GI and see about an earlier appointment?? I am not familiar with Canadian medicine, so I don't know if that would help or not. Good luck on your path to diagnosis,health and healing.
Link to comment
Share on other sites
mamabear Explorer
Well that would certainly be not good... I thought mucous and bloody stools was also a symptom of Celiac? As well, my barium enema had shown normal when i had that done. (i know colonoscopy is more accurate to screen for IBD)

Generally speaking, celiac patients do not have bloody stools unless there is a specific reason.....hemorrhoids,polyps,bleeding ulcers,etc.. Celiac disease by itself does not cause bleeding, although it can cause anemia from malabsorption of iron( B12, folate,too). Well....I guess there are exceptions to everything......guess a severe Vit K deficiency from celiac could predispose to some unusual bleeding. Mucus in the stools is another matter. I'd suggesy going to PubMed and putting "mucus stools" for the most recent articles /abstracts re: this. I checked it and it's 4 pages long.

Link to comment
Share on other sites
borst Newbie
Generally speaking, celiac patients do not have bloody stools unless there is a specific reason.....hemorrhoids,polyps,bleeding ulcers,etc.. Celiac disease by itself does not cause bleeding, although it can cause anemia from malabsorption of iron( B12, folate,too). Well....I guess there are exceptions to everything......guess a severe Vit K deficiency from celiac could predispose to some unusual bleeding. Mucus in the stools is another matter. I'd suggesy going to PubMed and putting "mucus stools" for the most recent articles /abstracts re: this. I checked it and it's 4 pages long.

Thanks for the reply.. the blood is usually only on the tissue paper, which leads me to believe that it might be internal hemmoroids as my first visit to the GI suggested.

I think i will stick to this gluten free diet for now and see if it does anything, because it will be a few months anyway before i get in to see the GI (long wait times in Canada). I'm sure with my symptoms they will want to test for IBD and i don't think going gluten-free would affect those tests?

Link to comment
Share on other sites
ravenwoodglass Mentor
Thanks for the reply.. the blood is usually only on the tissue paper, which leads me to believe that it might be internal hemmoroids as my first visit to the GI suggested.

I think i will stick to this gluten free diet for now and see if it does anything, because it will be a few months anyway before i get in to see the GI (long wait times in Canada). I'm sure with my symptoms they will want to test for IBD and i don't think going gluten-free would affect those tests?

Glad your sticking with the diet. You may find you can cancel that appointment that you need to wait a few months for. Going gluten-free is not going to effect the outcome of those tests or any others except the ones specifically for celiac. Keeping my fingers crossed for you that the diet makes the appointment unneccessary, while it is a pain in the butt at first it so wonderful when we can live pain free and without meds.

Link to comment
Share on other sites
mamabear Explorer
Thanks for the reply.. the blood is usually only on the tissue paper, which leads me to believe that it might be internal hemmoroids as my first visit to the GI suggested.

I think i will stick to this gluten free diet for now and see if it does anything, because it will be a few months anyway before i get in to see the GI (long wait times in Canada). I'm sure with my symptoms they will want to test for IBD and i don't think going gluten-free would affect those tests?

Certainly sounds like blood only on tissue paper could be just hemorrhoids. The diet will not affect your endoscopy/colonoscopy except if you heal celiac disease damage in the process...so that's good! A personal letter to the GI doc /assistant doesn't help up there?? I posted a flow chart on the diagnosis of celiac disease (and what else it can be ) a few months ago. I'll try and locate it for you.

Link to comment
Share on other sites
mamabear Explorer
Thanks for the reply.. the blood is usually only on the tissue paper, which leads me to believe that it might be internal hemmoroids as my first visit to the GI suggested.

I think i will stick to this gluten free diet for now and see if it does anything, because it will be a few months anyway before i get in to see the GI (long wait times in Canada). I'm sure with my symptoms they will want to test for IBD and i don't think going gluten-free would affect those tests?

I found the post and reference. ..unfortunately you have to have the journal (or pay to access it) to see it. If you have access to a medical library, it's in the Annals of Internal Medicine Sept 4,2007 edition. I don't have any way to link it for you......sorry. I found it to be very complete in diagramming the thought processes of making a celiac diagnosis.

Link to comment
Share on other sites
borst Newbie
Certainly sounds like blood only on tissue paper could be just hemorrhoids. The diet will not affect your endoscopy/colonoscopy except if you heal celiac disease damage in the process...so that's good! A personal letter to the GI doc /assistant doesn't help up there?? I posted a flow chart on the diagnosis of celiac disease (and what else it can be ) a few months ago. I'll try and locate it for you.

Yes, I've never had instances of LOTS of blood or blood mixed with the stool, just blood on toilet paper and occasionally (rarely) streaked on stool. It is often the case that i can feel a slight sharp pinch during a bowel movement which results in blood on the toilet paper. Same goes for mucous as well, it is quite rare that i get mucous in the stool; but i guess when i do it just stands out in my memory more.

I don't think a letter to the GI would help any, the system is quite bureaucratized here imo.. your family physician refers you, you wait for their receptionist to set up an appointment then you wait..

Link to comment
Share on other sites
nora-n Rookie

I had tiny specks of blood every day for three years before going gluten-free. Now it is totally gone. An aquaintance without a diagnosis but avoiding gluten has the same thing.

nora

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    2. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,065
    • Most Online (within 30 mins)
      7,748

    Deebatger
    Newest Member
    Deebatger
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
×
×
  • Create New...