Hi,
I need help with what to do next........

I've been sick for years with stomach problems. I was diagnosed with IBS and was told to reduce my stress. I've been managing my stress levels for years and feel like I'm a pretty mellow person now.
I thought I had a lactose problem but removing dairy from my diet does not help much.
I just dealt with my C & D by staying close to the bathroom and starving myself before important events.

A friend told me to go this holistic doctor that diagnosed her daughter with gluten intolerance. So, I did. She put different powders on my tongue while testing the strength of my arm. She told me I had gluten intolerance and a very small lactose issue.

Well, (as you all know) the gluten diet is really hard and I ended up not staying on it. I thought it wasn't working because I didn't do enough research to avoid all the gluten hidden in everything.
I stayed 'regular' with fiber tablets. If I don't take my fiber I get immediately C'd. With the fiber I get D at least 3 times a week but I deal with it.

I am revisiting my gluten issues after repeatedly getting awful headaches and fatigue after lunch and a really really sick incident after consuming too many triscuits.
I've been fatigued for a while but I've blamed it on lack of sleep. I have also had depression on and off for years. It is just really hard for me to see my symptoms when I've felt slightly ill for most of my life. I feel the best when I starve myself but I'm trying to be healthy now and eat at least every 4 hours. I've also had psoriasis since I was 13 and my friend told me that it may be connected..... does any body else deal with that, too?

I saw a doctor this past week and my blood test for celiac came back negative. She wants me to go through the 2 hour diabetes blood test and referred me to a GI guy. At this point, I feel like I should just follow the diet. I feel like if I have anything its probably an intolerance and all the testing is a waste of time. I don't have a lot of money and all those co-pays would hurt.

I guess I just need some advice... and to know that I'm not the only one with stomach issues and psoriasis.
and has anybody else done that holistic test?

Thanks,
Barb

You could have Celiac definitely (sometimes people have negative bloodwork but a positive biopsy), but I question the diagnostic methods of your Naturopath. No offense, but that is *complete* quackery. She probably knew she was going to diagnose you with "gluten intolerance" when she saw your stomach issues on file, and made up some random test to charge you for. Sorry to tell you this, but there is NO WAY to diagnose Celiac or gluten intolerance based on the "test" she did.

That's why I always say work with an MD (medical doctor) *first* before an ND. Sure she DID give you a diagnosis, but you could have figured that out on your own for free by using Google. If your MD suggests you need a diabetes test, GET IT. Undiagnosed Type 2 diabetes is NOT something to play around with. If you are on steroids for your psoriasis, this can cause Type 2 diabetes in some people. If your nautropath failed to mention this, she may be putting your health at serious risk. Get the test and work with your medical doctor. Psoriasis is an autoimmune disease, btw, so it in theory is linked to Celiac.

After your GI testing (if you're getting it), start a strict gluten-free diet right away and see if you feel better. Hope you do!

I've begun a gluten free diet and I'm going to get myself off the fiber so I can't blame my bloating and morning issues on it. I have taken topical steroids over the years. I try not to use them as much anymore.

I shouldn't have gone to holistic 'Dr.' since I didn't even listen to her and basically wasted my money.
I will go get that diabetes test but I don't think I'll see a GI guy unless the diet doesn't work.
I just ate a 'gluten free' lunch but I feel headachy and my muscles are really sore. I just want to put my head down on the computer and take a nap.
I've only been 95% gluten free for 3 days. 95% is because I had soy-sauce with my sushi and didn't know that it had wheat. I hope that in time I feel better.

Thanks Doll!

I don't know what test this naturopath did, but muscle testing is a valid test.

Some forms of testing out there that are valid are BioSET, ASYRA and ART. BioSET is electrol dermal testing, ASYRA and ART are similar but more advanced from what I can tell. I've recently started treatments for my daughter using the ASYRA/ART. They don't test for specific foods but components of foods that the body is reacting to.

Irregardless, if you feel better on the gluten free diet, stay on it. Dietary response speaks volumes.

Barb,
I was also diagnosed with negative (I think) blood work. But I am strictly following the gluten free diet and am 95% better. I just buy the gluten-free bread, crackers, and Bob's mixes and the soy mayo, cream cheese sour cream etc. My shampoo,conditioner, etc... also. My usual problem is contamination. I try to keep all surfaces clean but I still miss stuff...like the computer or someone eating a sandwich while dipping into my bag of chips. I have resorted to using a separate cabinet for my food and putting my chips in a small bowl, if anyone eats from my bowl I get up and get another one. They get the hint. Really, maybe you should try following the diet strictly. What could it hurt? A friend of mine told me that there are several other diseases that are treated with a similar diet.I hope things get better for you. It does get easier with time. Sometimes I wonder about our imported "everything" and if that is really the problem.

Here are some links about rare diseases that I found in case you want to research:
http://www.delawareonline.com/apps/pbcs.dl...00333/-1/NEWS01
http://digestive.niddk.nih.gov/ddiseases/a-z.asp
http://ord.aspensys.com/asp/diseases/diseases.asp
http://nord.clinicahealth.com/topics.pl?op...pic&topic=1
http://www.aarda.org/patient_information.php
http://endocrine.niddk.nih.gov/info/index.htm

3 days of 95% gluten free isn't going to tell you anything much. Give it a few months of 100% free and see how you feel. Also, I find that dairy products are very constipating so perhaps if you give up the dairy and the wheat at the same time everything will go smoothly (so to speak!).

As far as fiber... read this article: http://heartscanblog.blogspot.com/2007/07/...-come-from.html

It's a good time for me to make a change and I will follow the diet to see how I feel.

I'm sad that I may have to be really careful about what I eat all the time. But, on the other hand, if I feel better then its totally worth all the trouble.
I've been moving towards a more natural diet anyway.

And if going on this diet clears my Psoriasis....I'll be as happy as a pig in %^&*

thanks for the replies and i will look into more natural forms of fiber.

Here are my experiences with a dermatologist and a naturopathic chiropractor. When no one could diagnose my problems, I was sent to a psychiatrist who sent me to the chiropractor. She had all these vials of different substances and would put them against my stomach and push down on my arm. As you said, the arm would go down when a substance was supposedly toxic for me. The only thing I remember is her telling me I had a kidney about to quit (no proof of this since that time). Not once did she mention a gluten problem. A few years later (after diagnosis), my face broke out in horrible rashes, itchy, blistery, and painful. (I was not 100% gluten-free) When I explained to the dermatologist that I had celiac disease and could this be DH, his response was (I don't think so). That was it; no biopsy of the rash, nothing. I have no faith in these people!!!!!

I don't have any faith in doctors... not because I think they are wrong all the time, but they can't possibly figure all that is wrong with you if they don't KNOW you. My dermatologist doesn't ask me what I eat or how my stomach feels. When I ask him about diets and stuff his response is "well, try it and see what happens". I've had psoriasis since I was thirteen and went on a "diet" that my Mom was scammed into buying. I ate turkey and pasta all day. Ridiculous!
I've always had a "nervous stomach" too. I'm just confused and wish I could see a doctor that would ask ALL the right questions 'cause my symptoms have been going on for so long it seems NORMAL!!

Progress is slow and I get discouraged. I'm going to get my diabetes test soon and then we'll see. It seems as if I have the symptoms of hypoglycemia. I get soooooo tired and dizzy after lunch with blurry eyes and a headache. And I KNOW I have a stomach problem with some sort of food. If its gluten then I'm on the right track. But what I do know is that I have to figure this out myself 'cause the doctor can only offer tests, pills, and co-pays!

Celiac is a definite possibility. Don't stop with the blood test, you can push for a skin biopsy (test of you are DH Celiac) or other Celiac (biopsy of intestines). I am not a Dr. but hearing my experience may help.

A negative celiac blood test isn't a complete picture, and in my case it was totally misleading. I am 44 and have had stomach problems for years (maybe all my life), was initially tested negative for celiac blood test, and even negative for celiac intestinal biopsy back in 2004. My problems only got worse between 2004-2007. I pushed for tests again last month as my father is a DH celiac (he tested positive after skin biopsy). I tested negative again July 2007 for the celiac blood test but I tested positive for the celiac biopsy at the same time. One potential explanation for the first negative biopsy in 2004 was I had gone somewhat gluten free weeks before that test back in 2004, so my body was healing, and that could have caused a false negative. I have also read it depends on where they take the biopsy from, one part of intestines may not show damage. I have read many experiences similar to mine, where negative blood test but positive biopsy.

Regarding the stomach issues and psoriasis. My father was initially diagnosed with psoriasis but then later diagnosed with DH, he was diagnosed at age 60. I have also had eczema since I was a child, in my case think there is a strong chance the two are related. Have heard this from many people that have celiac, that they have skin issues as well. I also developed some lactose intolerance when my celiac symptoms were at their worst. That comes and goes. I have read the lactose intolerance can clear up celiacs after their body has healed and they stay gluten free.

I agree with your plan. That you should stick to your diet and see if it gives you any relief, from what I am reading it can take days, weeks, or even months to feel better. I am only 1 week into my gluten free diet, only a little improvement so far. Just remember if you want to get a firm diagnosis and get the intestinal biopsy you need to go back on a gluten diet for a period of time. Not sure about the skin biopsy accuracy effects of going gluten free. Good luck!

It's been three weeks and minimal success. I've been 99% gluten free.

I don't feel that great yet. I still have fatigue and headaches. I had the diabetes test done and that "did not explain patient's symptoms" end Dr. quote.

I think I might be on the wrong path.

I'm frustrated and wish that I understood what is happening to my body. My stomach symtoms seem related to dairy, too. BUt why the heck do I have such fatigue and dizziness after a gluten free lunch?????

I don't think I have celiac disease (ie damage to my sm intestine) because I don't have weight loss as a symptom and my blood work came out negative. So how does a gluten intolerance give me headaches and stuff?


I really don't get it. Any help would be greatly appreciated.

Barb

It's possible you have food reactions other than OR in addition to gluten. People who have trouble with gluten often have trouble with dairy (lactose and/or casein). If you're eliminating one without the other, that could explain your ongoing discomfort. Other common offenders are yeast, sugar, corn, eggs, tree nuts, soy and peanuts. An elimination diet and a careful food journal would help you find the culprit.

So, from your posts, I'm gathering your doctor has ruled out Type II diabetes? Yet from your symptoms, it sounds like you do at least experience some blood sugar issues. Eating 5-6 small meals a day rather than 2-3 large meals, or worse, starving yourself, will help keep you on an even keel and you should be able to avoid dizziness and blood sugar crashes.

Ya know, we've all got horror stories we can tell about different doctors, but I hate to see someone who's suffering give up on the medical community. Educating yourself, experimenting with foods, keeping a journal of symptoms, reading all the digestive health books you can get your hands on is very important - but so is finding a doctor you feel can help you. Don't give up after one or two (or more) bad experiences... keep looking for the right one. Ask friends or relatives for referrals or see if someone here lives in your area and could refer a wise, helpful and reputable doc. From your original post, I really think you NEED to see a qualified gastro doc who can help you pinpoint your trouble.

Hi Barb
Firstly, you do NOT have to be underweight to have malabsorption (plenty people here were overweight!)

It's very common for symptoms to continue for a good while after starting the diet (especially fatigue) - headaches also very common.

My husband had negative bloods but went on to have a positive biopsy.
He was age 40 yrs at diagnosis.
If we assume he had had celiac disease for many years undiagnosed, it's safe to assume it would take a while for his body to repair itself.

Unfortunately not everyone feels instantly better by going gluten-free.My hubby certainately didn't!
It was months before my hubby felt ANY improvement (and he might of thrown the towel in on the diet if he hadn't have had proof by biopsy!)

Also - in coeliacs it is very common for temporary lactose intolerance to rear it's head once you are gluten-free.
One of my hubby's biggest symptoms was terrible headaches if he had milk.

Unfortunately, for you to establish if you are either a coeliac or gluten intolerant you ARE going to have to be 100% gluten-free (to the best of your ability) and give it time.
Very frustrating I know - but be patient before you decide that gluten is not your problem

Good Luck

I had a lot of the same symptoms but doc thought it was an ulcer. So I had a GI who did the endoscopy. While he was there he took biopsy samples, but I had no blunting of villi. BUT I did have evidence in the sample of immunological response and was diagnosed with celiac on that and the resulting dietary response. My bloodwork for celiac, though, was negative.

To make a long story short, only about 30% of celiac sufferers have positive blood work. Do a search here or in medical journals but I think it is due to the fact that you have to have totally flat villi, lots of damage, to have a positive blood work. Just because the blood test is negative, doesn't mean you don't have celiac. Oh, and I'm overweight too. I had the dizziness and fatigue, which is now getting better after six months.

I am SO grateful to the GI doc for taking the samples. You might consider getting the endo

Good luck and I hope you feel better.

~Laura

Barb
I don't know if this will make you feel better or not, but I'll relate our story.
It's long but I'll try to highlight the important points
My son was diagnosed malabsorption syndrome at age 2. No explanation. At age 8 he became very sick and referred to a pediatrician. Blood work revealed extremely low iron/B12/folate/elevated ESR
etc. etc. Bottom line "all screwed up". The doctor was amazed he was growing normally. He had chronic fatigue. He was however only mildly anemic. Celiac markers negative. No explanations.
By age 10 his endurance was low, headaches, stomach pains, loose stools (including funny colors)
This boy never complains, which makes it harder now to think about. He suffered for 10 years with symptoms and grew up thinking this was 'normal' for him. No one could explain to him, so he stopped telling. I am a nurse. I work on a general medical floor, including a gastroenterologist.
Celiac disease never even occurred to me!
I don't know why I clued in, it just happened. I decided to try the diet for him.
My husband had unexplained anemia as a child. He has had psoriasis all his life and at age 46 developed psoriatic arthiritis. He is on heavy meds that barely work. He suffers chronic migraine headaches that put him to bed in a dark room. He has loose stools. He always considered this normal. He was started on antidepressants for mood swings. He would sleep 15 hours a day.
Between him and my son they go through a supersize bottle of tums a month.
I put them both on the diet. I made lots of mistakes. At first I thought, 'What's so hard about this?' I did more research and learned lots. I still believe the diet is not that hard. It's more finding the stuff while living in hicksville.
The difference in the 2 of them in 2 months was astounding!
We no longer buy tums in this house. My husband works all day comes home and works around the house til bed. He rarely sits down. No further headaches. He has cut back on his meds and his psoriasis is virtually gone. (And we're talking full body rash here! Scratching on every door frame he passed and vacuuming the bed every morning!) My son plays rep hockey and lacrosse. He borders on hyperactive. He can tell immediately if he ate the wrong thing. I have recently heard him tell his friends "I can't have that!" Now he asks me why he had to feel bad for so long. What can I tell him?
That the Doctor's are idiots? Wouldn't that include his mother?
Since I am now more educated we have diagnosed 2 patients in hospital with celiac disease. One of which was close to death. The diagnosis was mine to make. Blood tests were neg. I suggested the diet.
Both have made a full recovery and returned home. Their families say it is a miracle!
My point being this disease needs more study and literature to get the message out. Your doctor is only an idiot if he dismisses the possibility. The only way to diagnose in my opinion is to go strictly on the diet. The literature suggests up to 18 months of diet to allieviate symptoms. If no improvement after that time it is not celiac. If better than a life long commitment to the diet is required.
Keep your chin up. Keep on the diet. Once you feel better physically, you'll feel better emotionally and it just snowballs upward from there.
Look to this website for support. There are some really knowledgable people out there. Lots of experience.
Hope this helps
andie

Hi Everyone,
I am new to this site. For about 12 years I've been fighting issues with my stomach, sinuses, fatigue, acid reflux, skin rash, asthma, bloating, severe bread/sugar cravings...you name it, I had it. I am 27 years old, I eat well, exercise, and manage my stress as best I can.

I recently lost 10 pounds in a matter of 2 weeks without doing anything differently and even rarely exercising the past few weeks. Being 5 feet 8 and already thin, it's a big loss and really shows! I was feeling so sick that I went to my acupuncturist. He did the muscle testing and found that I was very allergic to wheat and gluten. I have tried the diet but I am still finding that I am getting sick! The bloating is much better, but I am still feeling tired and getting headaches. I have tried switching beauty products and yes, I do live with my boyfriend who eats wheat/gluten.

So I went to my doctor and she tested me for Celiac. I was CONVINCED I had it- I had all the symptoms. But...I found out today that my blood work was negative. I am so baffled. I don't know what to do. I am ready to throw in the towel with the diet but I need some support. My doctor said to keep up the diet but she thinks I am intolerant to wheat and gluten. But I am not one to do well with theory! I like to see it on paper!!

Please give me any and all advice. I am really struggling with this. Thank you so so much.

hi,
it may be better to start a new thread here.
And , about 5 to 10 % of biopsy -proven celiacs have negative antibodies. Just reead it in the bmj or somewhere.
What was the name of the test?

nora