Hi I am posting this in the US as after 4 year's of progressive illness in the UK I have received no help, and I know my GP will kill me If I do not get help from the real experts! Yourselves obviously.
My history is, I started having severe 'Colic' my GP called it, when I was about 7, from things like Macaroni and milk pudding. Dismissed by GP as just Colic. I could never put on weight and was always anaemic, for which they would give me Iron, which would then constipate me and then they would give me liquid paraffin. And so it went on, until I was 15 and my periods started when I got horrendous period pains, which have remained until now at 47. I weighed 6 to 7 stones until I was about 28 when my boyfriend (now husband) started trying to fatten me up. At that time I started to get bloating, and nausea and even hiccups, and looking back it was all bread or pasta related. I was then diagnosed with ME (myalgic encephalitis) otherwise known as Chronic Fatigue Syndrome. About 4 years ago I started getting a lot of weight gain then it all came off. Not dieting or anything. I had been getting lots of hip and lower back pain and then muscle and joint pain. Along with mouth ulcers and worsening eyesight, and worsening Oesophageal Reflux, and unable to sleep because of it. I also had swelling and bursting of the veins and capilliaries in my hands, which also caused carpal tunnel syndrome. Had blood tests and they said that my liver function tests were slightly elevated and that I had ANA's. I was then tested for Lupus, negative. I was told that I had vasculitis in my hands and I must have unclassified connective tissue disease and sent on my way and told to come back If it got real bad! It didn't get any better and I went back to GP Jan 07 as digestive problems had got real bad. By the time I got an appointment with GP (you can wait 4 to 6 weeks over here) I had noticed that it was much worse when I ate wheat based foods. This took me 47 years to realise! I do feel a bit stupid. My GP just dismissed this and did a general not specific test for 1gA which came out at 3.37g/L which he said meant that I did not have it.
Regardless of the fact that I had not eaten hardly any wheat for a month. So I was told I was OK. Which I believed, well you do don't you? I was then sent for an endoscopy of the upper GI tract to check for ulcers. No problems. Summarily dismissed I was sent back to Rheumatology who this time diagnosed me with Fibromyalgia. After 4 years LFT's were still slightly raised. I notice now though that they had been lower at the time I had cut out wheat! Everytime I mentioned possibled Celiac's I was dismissed. I then gave up, until the summer when I found a lump in my salivary gland which was dismissed by my GP as a 'Lipoma'. He told me to come back in six weeks to see if it had grown! It was already the size of a kidney bean! I went back and was told no it is a lipoma. Then I started to get frightened and looked on the web for just one case of a lipoma on the stensens duct. Not one mention! So I went back and eventually got sent to Maxillo Facial who did an ultrasound which was inconclusive and I am going for an MRI and a lip biopsy to see if I have Sjogren's on March 3rd. In the meantime I tried to remove wheat from my diet again, but replaced it with Rye and Spelt, which made me worse. So I have found out by doing so that I am definitely long term untreated Celiac. The last month I have cut out almost completely Gluten and have seen my LFT's just this week creep into the upper normal range (only just!). I have given up trying to tell my GP or the Rheumatologist. I have now been sent back to the Rheumatologist who says I have Sjogren's but has no idea why I have raised Liver Function Tests and no idea what is wrong with my veins in my hands.

I will now get to the point, I need help to know how to look after myself and to continue to help myself. What to avoid or cut out completely and what may help. As cutting out gluten has stopped my joints and muscles hurting which has allowed me to exercise more and feel even better. I also had an underactive thyroid over the past 4 years and when I started cutting down on gluten in the Autumn it kicked back in and went back to normal. This inspired me to cut it out completely last month and to no longer be dismissed by my doctor's.
All of this cannot be coincidental! I just have to hope that I do not have cancer in my face now due to their dismissing me as a hypochondriac woman of a certain age!
I have read lots on your website about Celiac's having ANA and slightly raised liver enzymes and some also having Sjogren's.

I am sure there must be some of you who have gone through the same things and could share experiences.
Thanks so much for taking the time to read this!
Dibbles1960UK

Hi Dibbles and welcome to these boards from another 'hypochondriac'. I finally figured out I was sick because of gluten when I was 52, two years ago.

You are right, forget about doctors, be your own doctor and get well.

You have figured out that you shouldn't have anything with wheat, rye or barley. Good for you. In order to really heal you will likely have to eliminate all dairy and soy as well, as they can greatly hinder healing with celiac disease. Some people with celiac disease can tolerate oats, while many can't. You will have to figure that out.

It would be best if you stay away from the officially declared gluten-free foods that contain wheat starch or wheat germ oil. I understand that in Europe they claim that those don't contain any gluten. But a lot of people with gluten intolerance get sick from them anyway.

Make sure you buy a new toaster, as you can't clean the old one well enough to be safe. The same goes for plastic colanders that have been used for wheat pasta, and wooden cooking spoons and cutting boards.

Also, even though there is controversy over this, in my opinion it is best to replace all your personal care products that contain gluten with gluten-free ones. That includes soap, shampoo, conditioner, lipstick/chapstick, toothpaste, bubble bath, lotions etc. If it says wheat germ oil, barley extract or oat bran, don't buy it or use it. It is almost impossible to not cross contaminate yourself with those. Why take the chance when there are gluten-free products out there.

I have fibromyalgia and chronic fatigue syndrome as well. The fibro is gone when I don't eat the foods I am intolerant to (I have some residual pain, probably permanent damage from being in pain for fifty years), and I believe the chronic fatigue is due to my adrenal and thyroid problems. It can't be gluten any more, since I have been off it for two and a quarter years now.

I have never heard of anybody older than one being 'diagnosed' with colic! What nonsense, unbelievable. It is the same thing as the IBS diagnosis. It is CAUSED by something!

My one granddaughter had terrible colic. I paid to have her tested for intolerances. My daughter (who was breastfeeding) stopped eating the foods the baby was intolerant to, and bingo, the colic stopped.

I wished I would have known that when this same daughter was a baby. She had awful colic! Well, she is intolerant to wheat, corn and dairy. I am sure we would both have been better off if I would have stopped eating those foods then! But that is 26 years ago, I didn't even know what gluten was then.

I got smarter with the next one and figured out that my son would get a raw bum to the point of bleeding every time I ate any red food. Strawberries, tomatoes, cherries, beets........ anything red.

Ugh, doctors.......... I have seen my share of ignorant ones. I am still feeling terribly frustrated with the last 'specialist' I've seen. If only we wouldn't need them to prescribe the medications we need.

Keep up the good work, you are doing fine. I really hope that those lumps in your mouth will improve or are at least benign.

Dear Dibbles,

Thankully you are starting to see you way through. I am so surprised doctors in the UK could have made this mistake since celiac is so much more known there than here in the States. I too have been known as a hypochondriac even by many members of my family not to mention the medical doctors I have seen. However as its turning out I am becoming more healthy than most of my family despite a life of being sick most of the time. And I am sure a doctor who knew my past would shake his or her head in disbelief

I keep finding out new things from my aged mother all the time which I wish she had told lme years ago. However she wanted to beleive I was normal I guess for some strange reason even though she isn't either--however for her her mother protected her and kept her off all grains until she left home. Afterwards however my mother went off diet and although she did fairly well she developed memory and eye problems as a result.

My latest discovery from her for instance is that I was diagnosed with gluten intolerance when I almost died as an infant at four months old from pneumonia and failure to thrive after being just fine pre-grains. They put me in isolation and eventually determined I couldn't eat gluten. I knew about the pneumonia and failure to thrive but not the gluten inotelerance at such an early age until now.

However by age four I was slowly introduced to gluten again and became sickly for most of my life. Unfortunatley I think our parents generation really was into major denial about diet. They thought everything was controllable by the mind and science. I think medicine is still back there stuck in this antequated view in the States anyway but slowly its being turned around in part I think due to sites like this.

I almost died again at age 23 from kidney infections destroying 1/2 my right kidney. Fortunately my grandmother told me it might have something to do with food allergies. She was completely right. I saved my kidneys and my life by going off gluten and citrus as well as nuts etc. By this time I had multiple food allergies. I also had the beginnings of skin cancer which went away with a change of diet and using detox herbs.

Really I saved myself by using detox herbs plus herbs that heal the kidneys--including marshmallow root with soothes and heals both the kidneys and the gut. I have found the herbs also help with other conditions including joint problems due to generalized inflammation. Burdock by the way was very helpful too for helping heal my skin problems which also included dermetitus herpetiformus as well as small flat cancer like growths.

Co-enzyme b vitamins for me was a final piece I discovered almost two years ago. Despite taking the usual B vitamins for years they were doing me little good. I can't tolerate yeast based b vitamins and the co-enzyme B's are way more absorbably than the synthetic B's. The B's are essential for carb and protein metabolism as well as a host of other important functionings. I like Country Life since the sublinguals from other brands often have sorbitol which is iffy for me.

At my suggestion several other people here on the board have also found the co-enzyme B's very helpful for healing thier skin and nerve conditions, including the eyes. I found it essential for a healthy heart and nervous system and also so I can exercise more vigourously. I also now finally can safely use a sauna and jacuzzi--but never could before without getting really dizzy. And my eyes have actually improved and my hair has gotten stronger and has more body.

The detox herbs I found most helpful are dandelion alternating with milk thistle, and yellow dock althernating with oregon grape root. The alternation is important if you take them continuously for 10 days, however one week on and one week off is easier to remember. These (and other) detox herbs will make your liver a lot happier as well as your joints. You miggt want to check out some good books on the subject.

Again slippery elm is always good to take for a healthy colon as is slippery elm. I suggest them to be taken with every meal, especially while you are healing.

Useful digestive enzymes for celiacs are pancreatin and bromelain/papain.

Bromelain/papain taken with nattokinase or serrapeptidase away from food counteracts scar tissue in the gut and elsewhere and really helps reduce infalmmation joint pain.

Finally please stay away form all trace gluten to avoid joint pain and other problems. Apparently as celiacs its way above and beyond food allergies. Just a whiff of the stuff in a sensitive individual can cause real problems for days as it has for me just kissing my boyfriend after he has had some grain alcohol. Look here on the board for advice on avoiding hidden gluten from wooden cutting boards, old pans etc. .

I am sure you are now also taking the usual supplements too--vit. C, E, D (I like cod liver oil since it also has omega 3's plus vit. A) , sea minerals plus kelp, primrose oil, acidophilus with FOS, Omega 3's etc. etc. Plus good oils in general like coconut oil and olive oil plus cold pressed sunflower or safflower oil.

For myself too being a vegetarian is out. I tried twice and got very sick both times after a year or two. I have to eat meat along with my vegetables like the hunter gatherers of old. But then I am of northern European extraction with type O blood. However celiac is as I understand it a result of hunter gatherers not making the transition to grains very well 15,000 years ago. All humans were adapted to a non grain diet before that for more than a million years. Now many of our degenerative diseases are greatly relieved by going off gluten for most anyone. Especially initially its best not to eat ground up flours and also avoid sugar and processed foods.

I hope this is helpful to you. Please keep me posted if any of the herbal remedies work for you too.

Good luck!

Yolo

Hello Dibbles,
You are certainly a Celiac, judging from your symptoms. I do not have much time to write as I am going away for the week-end but a few comments.......I have Sjogren's and there is no need for a biopsy on your lip to prove Sjogren's. That is the old fashioned way to diagnose. There is a blood test to check for elevated antibodies called SS-A and SS-B. This will tell you if Sjogren's is the problem but your other symptoms point to it also. Mouth ulcers are common, I had them for years and haven't had one since going gluten free. The lumps in your salivary gland are common also....they have a tendency to swell from the inflammation. I did not experience this symptom but my niece has and the side of her face would swell, it got so bad. If you go gluten-free successfully, symptoms can be brought well under control.

I also had elevated liver enzymes pre-diagnosis but now they are in the normal range. Your liver works harder when your body cannot digest gluten and many, many doctor's miss this one. My cousin, who I am convinced has celiac disease also, just underwent a liver transplant because of autoimmune liver disease and his doctor's STILL don't get the connection.
Elevated enzymes do not mean you have autoimmune liver disease either, just that you are showing stress in your body. It's just another symptom of an underlying problem.

It can be just as hard to get a doctor to listen in the States too but at least you can get right in to see someone here.
Relax.....your problems sound like they are celiac disease related and if you cannot get satisfaction from a doctor here, go gluten-free yourself and see what happens to your symptoms over time.

Elevated ANA can also be caused by Celiac and Sjogren's but it is a general test for inflammation and will only tell you that there is inflammation somewhere in the body. But if you have symptoms of either one, it's a pretty easy guess to figure it out. Don't let them scare you into thinking you have cancer.....those lumps are VERY normal for a Sjogren's patient. Sjogren's is also classified as a connective tissue disease so that might explain the problem with your veins in your hands. It's all connected and most likely, are all from celiac disease. Good luck to you and I hope you find resolution to all your problems.

Hello and Welcome.
Another 'hypochondriac' here.
I don't have a lot to add other than a welcome and that you have found a great place for info. You are certainly not alone, there are many of us that have suffered needlessly for many years watching our bodies deteriate while they shove drugs at us, many toxic or even deadly. I am glad you have finally started your road to recovery. Read all you can here, celiac can be tricky to learn to live with, but living is what we get to do, and for most of us our life really starts a couple of months after we begin the diet. Ursa gave you excellent advice about trying to go with naturally gluten free foods for a bit until you heal. Labeling regualtions on both sides of the pond leave a lot to be desired. Sensitivilties also vary amongst us and the easiest way to tell how sensitive you will be is to go with things that are as unprocessed as possible and leave the risky stuff for after you have healed. As mentioned you should also cut out dairy if possible until you are symptom free for a little while, it will help speed the healing along.

Gemini, thank you!!

Hi Ursa Major, Gemini, RavenswoodGlass, and Yolo

I am SOOOO grateful for your replies, and feeling much less 'desperate' than I was yesterday. I cannot begin to thank you enough or explain how much better I feel. You are all so kind and helpful. I am implementing all the things that you have suggested, immediately in some cases and progressively in others. For one, I threw out all my cereal and pasta storage tubs and contents today and went out and bought new ones and filled them up with new gluten free items. I never thought about cross contamination. I did not know about barley malt flavouring until today, which explained why I had digestion and diarrhoea problems come back over the last few days. I had inadvertently bought rice krispies with it in! Luckily I have a good husband who is quite happy to go gluten free with me. I did not know about the soy and got rid of anything with that in today, as I had replaced milk with it, unwittingly. I have bought rice milk to see how I get on with that. I had previously tried lactofree milk, but then on reading the small print found that it contained lactose anyway, just less of it! I cannot believe the things they put gluten and wheat in, when there is no need for it. We have been going as organic as we can and have been cutting out as many processed foods as possible, so thanks to you all, we now know that that is the right thing to do, and will continue with it. I am going to try some herbs, one at a time and see what helps me, in the recovery process and then long term. I seem to notice much more quickly, now I know what to look for, when something that I have eaten has a negative impact on me, and start looking for what caused it. I have started putting my blood tests on a spreadsheet on my computer with dates and am keeping a food diary by me at all times. Yolo have a wonderful weekend and Gemini, Ursa Major and Ravenswood Glass and everyone else out there. Thanks with lots of love from across the pond!!

Yay!

I am so glad too that you have a supportive husband! It makes all the difference.

In contrast, I asked my boyfriend to just brush his teeth after drinking whiskey before kissing me and that was too much for him (after I finally figured out why I was getting sick the next day each time after I saw him). I told him that was it. Its just too hard for him to take my condition seriously--so now its bon voyage dearie.

Hi Yolo

I think I would have told him to sling his hook too! I hope you find 'a good 'un' next time!
I have done what you said and got a good multi-vitamin plus Calcium, D and magnesium and K. I thought it might help with the veins in my hands.
I had started getting nerve and muscle twitching in my legs and that caused me to look those symptom up on the web. It said that it could be caused by malabsorption of vitamins etc., and that was when I decided that I might be right about Coeliacs and that my doc was just too arrogant and closed minded.
I had levels of ferritin at 18 and sodium at only 1.36 both right at the bottom of the normal range or just below it, and the same was true of my red blood tests. They seemed to think that was ok! Nothing wrong!
I have since looked up the consequences of these being low and they can cause hypothyroidism and hair loss, both of which I had developed, and funnily enough can be caused by malabsorption in conditions like Coeliacs!!
Makes you wonder how much they actually listen, or whether they have decided before you even walk through the door, that you are a middle aged hypo!
I had a high 1gG and a high 1gA both at the very top end of normal last year and this meant to my doc that I did not have Coeliac, even though they knew that I had not eaten gluten for at least a month.
I didn't even know, back then, what tests they had done, or what they meant. I only got copies of my blood tests from them recently, and have been looking them up and trying to understand what they meant, ever since. I found out from this website that these are high in Coeliacs.
I bought a few more suitable vitamins over the weekend and I now have a plan! I just have to put it all into action and see what happens. Thank You! Again and forever!

Good luck with all that!

And by the way consider getting bromelain/papain and pancreatin to take with your meals. It makes a good deal of difference. Ditto with marshmallow caps.

welcome to the forum!

i knew there were "bone heads" in the UK but i didnt realise it was that bad here...(i live in Wales).. in fact my GI is really good... only took him a few months and im one of the difficult cases

keep going you are doing brilliantly, there is a lot of controversy about oats, my dietitian has told me to keep away from them for now because it is so hard to find pure non-contaminated ones, but only you can figure out what to do about that.

yolo thats tough when the people who are supposed to love you are so insupportive, ive net my fair share of idiots that just say "oh well it wont hurt you this once".

ive had one or two doctors like yours, that just repeatedly told me im fine.... then a locum came along saw my notes and checked for anemia.. then coeliac.. then she reffered me to an excellent GI who put two and two together even with negative biopsy and no symptoms (other than anemia).. so have faith there are good people out there

I'm glad to hear your experience with your doctor in Wales is so much more positive. Its hard here in the Western United States. Here we have to convince not only our family and friends that this disease actually exists and is not just some kind of "fad"--but also our doctors! Its easy to give up but really I am starting to see inroads by not doing so.

The actual fact is that this is a relatively common disease even though here so many are in denial. I think this could be one of the reasons why the health of the American People is nearly on the bottom compared to other developed countries even though we spend more money on it than others.

hhm it seems really difficult to find a doctor who knows what they are doing in america ... i feel truely sorry for you .. for anyone in the UK looking for a good peads GI i can reccomend the Royal Gwent Hospital, a lot of their staff seem pretty clued in ... although ive been told that the adult department arent as good and thinks that celiac disease belongs in the kiddies department