This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Hi everyone. I've only just picked up on this thread as I haven't been active for a while. I'll be shortly heading to the store to pick up some nettle tea to test out...
Inflammation is definitely a problem for me. Before I went gluten free I had no celiac antibodies, but did have a very high ESR (100), and a few other blood abnormalities including a highish TSH. Going gluten free brought the ESR and TSH down to decent levels, and the worst of my symptoms (frequent episodes of migraine, vomiting and D, skin rashes, itchy and burning skin) improved, some quickly and some gradually over about 6 months. However I did still have lingering abdominal pain, head and muscle aches, fatigue and brain fog. An endoscopy after 6 months on the diet confirmed ongoing gut inflammation.
8 months further on with these dragging symptoms, despite eating a strict diet mainly free of unprocessed foods I finally understood a way to manage the problems (although I don't really understand why this should be so). I realised that the brain fog was caused by the paracetamol and codiene painkillers I was frequently using to control the head and body pains (I had not been taking more than the allowed daily dose, but did take them on most days). My brain fog cleared within about two weeks of stopping the medication, and the headaches and body pains also reduced significantly - a sure sign of their overuse!
Once that was out of the way, I could see that the headaches or body aches started only if I ate grains, with rice being the major culprit. Going grain free (with a little corn now and again) has stopped the headaches and body pains immediately, my gut was more comfortable and behaved better, and within a few weeks my energy levels soared. Evidence of finally getting the remaining inflammation under control.
Finally, for me, the inflammation may be allergy-related in some way. Since ditching the painkillers and the rice, I have discovered that any headache or gut pain is alleviated by taking an anti-histamine. It doesn't seem to matter which one, I take either Zantac (and H2) or Piriton (an H1). They both work extremely well for me. I would be really interested to hear if this works for anyone else.
Thanks for reading. I'm now off to buy some nettle tea!
I found the worst of the forgetfulness and inability to focus improved within a couple of months. I can now shower in the morning without having to really think hard about whether I have just rinsed shampoo or conditioner out of my hair. However, after nearly a year, I am still forgetful about shopping lists etc, and it is still a struggle to focus properly at work.
It might just take more time than you think. When I saw a rheumatologist I think he was minded to diagnose fibromyalgia, as I leapt in the air when he tested the fibro sensitive points, all of them. I think he saw that I was underwhelmed by this idea. Ditto IBS with a gastroenterologist. Apparently I don't have celiac....They were both right that I dislike both these diagnoses in anyone, as they are just a label to show that doctors understand that there is a significant problem, but don't know what is causing it, or suggest a decent treatment. If I hadn't had the confidence to insist that gluten was quite likely to be the enemy thanks to a strong familial history of confirmed celiacs, I would still be eating gluten, still be sick, still using expensive healthcare resources, and probably wouldn't be working either. Anyway, both doctors were happy to accept that I am gluten sensitive as my inflammatory markers and some minor antibody tests and nutritional deficiencies normalised on going gluten free and my response was confirmed by elimination/challenge diet.
You might also want to look at Irishheart's content as she deals with major neurological pain, but is improving slowly.
Love2travel - I admire your attitude so much. It takes great strength of mind to push severe pain to one side and get on with living life to the full. I am really sorry to hear that you still haven't experienced any improvement in your pain. For me, gluten seemed to cause systemic inflammation which then squeezed any weak or damaged areas of my body (I have some dodgy discs and had widespread soft tissue damage to my neck and spine after a car accident some years ago). Removing the gluten reduced the inflammation, which in turn reduced the pain hugely. Improving the flexibility of my spine and the strength of my core neck, spinal and abdominal muscles via therapist-guided pilates also made a massive difference. I had to stop my "maintenance" routine when I fell ill (I was so sore and stiff, it just stopped working!), and haven't got back to it yet, but I hope to so soon, to complete my recovery.
I have a colleague who suffers in a similar way to you, and who has a similar tough "mind over matter" attitude to her pain. She smiles and jokes while walking slowly and stiffly with a cane. You can see the pain in her eyes, but she ignores it. I do wonder if removing gluten from her diet might help reduce her pain at least a little, particularly as she has a son who seems to have classic celiac symptoms. I have talked to her about the effect of gluten on my less severe pain, and she is interested, but hasn't as yet pursued it.
I met a young girl and her mother at a youth event recently. The girl had started using a wheelchair 6 months earlier, and the mother was frantic trying to find out why. Her doctors (from a major hospital) were clueless. Apparently she could just about move her legs, but it was extremely painful for her to do so. I asked her Mum if she had been tested for celiac. The Mum said no, she hadn't thought her symptoms could be celiac-related, but that her other daughter had celiac...... Neither the Mum nor the girl's doctors seemed to have any idea that gluten could cause anything other than abdominal symptoms. I gave her references to a few medical papers to show the doctors, to try to hurry along an appropriate referral for investigation. Apparently she is following them up.
Penny - I lived with chronic fatigue and low grade pain, mainly in my back, for 25 years, following the sudden onset of what I now know to be celiac-like symptoms when I was a student. The doctor called it post viral fatigue, but with hindsight I doubt it was that. Over the years the pain worsened and I gradually developed chronic headache/migraines, severe neck, shoulder and back and hip pain.
18 months ago I developed systemic inflammation and I felt so stiff I could hardly move. I felt like the proverbial michelin man, unable to move in a large inflexible body suit. I had other symptoms too. I was so tired and ill-feeling I was struggling severely at work. I could hardly walk anywhere, let alone go to the gym, and was doing the bare minimum to get by at home.
I went gluten free nearly a year ago, and the worst of the pain disappeared quite quickly. The stiffness resolved, the migraines, neck, shoulder, back and hip pain went away, the tingly or sometimes numb arms and fingers normalised, and the generalised body aches reduced. The fatigue didn't go though. In fact it got much worse for a while, to the point I thought I might yet have to give up work. It did gradually get better, but it took over 6 months before I felt anything other than horrible on waking each morning, and being able to bounce up the stairs rather than stagger. The main recovery factors were probably just time and patience, but I think being as grain free as I could reasonably bear, avoiding processed foods, taking vitamins and probiotics, and being very vigilant about cross contamination helped speed things along.
Because I was still struggling with some abdominal symptoms, and to try to get a formal diagnosis via endoscopy etc, I did a gluten challenge of just 2 weeks about 2 months ago. It was really horrible, as the all the body pain, fatigue, migraines and abdominal pain came back with a vengeance. Since going gluten free again, my recovery pattern has been the same as before, and after 2 months I still have some minor residual pain, and am still significantly fatigued. Things are still improving slowly though.
I hope you feel better soon. From reading other people's stories here, I suspect my improvement was reasonably quick. I've seen some say it took a year or two to feel significantly better.
PS It's early days for you yet, but have you considered that other intolerances might also be contributing to your pain? For me dairy is a big no-no for abdominal symptoms, soy seems to be a trigger for body aches and migraine, and coconut gives me burning skin. I am trying to be vigilant for any other triggers, and remain suspicious of eggs and nuts.
I usually haven't eaten anything for 24 to 48 hours after a glutening, and have gastric pain and irritability as well as lower abdominal pain and soreness. I've learned the hard way to reintroduce food very carefully for a few days. I can't do any sort of regular food, or it just goes straight through. I stick initially to homemade vegetable soup using a chicken stock base, and then after another day or two add in sweet potato or potato with some fish and maybe some vegetables. I don't do well with any grains for a little while, and start with just a little white rice or low fibre cereal like gluten free cornflakes. My appetite or ability to deal with a "normal" meal or any little treats doesn't return properly for at least a week. It also takes much longer than that to get over the body aches, fatigue and foggy brain.
Bartfull - I don't have problems with corn that I am aware of, other than sweetcorn kernels being the last thing still to go right through me. I've been thinking about the preservatives that Mamaw mentioned and have been looking into sulphites. This seems to tally quite well with my symptoms which I get on eating a wide range of mainly processed foods, and I really struggle with wine (the only alcohol I might drink), but erratically so, as if there is level of tolerance and then a tipping point. Another clue for sulphites is I have had an anaphylatic response to both intravenous antibiotics and injected corticosteroids. Those, wine, and processed foods often have high levels of sulphites apparently. I have started to test this theory out by heading back to my "beginners" diet of fresh vegetables, rice, potatoes and fresh meat/fish only, and avoiding onion, garlic, leaks etc. Without knowing it, my beginners diet was low in sulphites. I am also going to look at my shampoos etc to see if removing sodium lauryl sulphate will help with my itchy spotty scalp. I know all these things helped alot when I first went gluten and lactose free, but I haven't been able to get past a level of milder residual symptoms with too many episodes of recurring migaine-based illness which lays me out for a couple of days each time.
I haven't been reading the board so often lately, have you been able to find enough safe corn-free food for yourself?
Thanks for the thoughts. I am not sure it was a bacterial problem as a glutening for me involves a migraine, and the symptoms are quite distinctive. This time was no different. A preservative being a contributory factor is something to consider. I am pretty sure that soy is a minor trigger for me, so it is not a stretch to think that chemical preservatives might be another. Maybe I will ask the retailer about their production facility. I've been trying to avoid doing this, as I don't want to have to think of myself as unduly sensitive to CC.
I cooked supper for a friend and myself the other day. The following day I had all the usual symptoms of a glutening. The only thing I did different was serving a ready-prepared bag of green salad with supper, and ready-chopped fruit salad for dessert. This is the first time I had eaten ready-prepared fresh food since going gluten free. Having recovered reasonably well, I thought I dared risk it as I was unexpectedly too short of time to prepare anything else. Is this really a genuine risk, or was I maybe just unlucky and fail somewhere in my usually pretty careful environmental hygiene routine? I would be surprised I had purchased a rogue batch of food, as it was purchased from a very reputable retailer.
I can't imagine how crappy that this for you. I get sore sinuses, drippy nose, stomach ache and loose stools for a day or so just from sitting at a table with bread close by for the wheat eaters, or if I spend more than a few short moments petting my wheat pellet eating chinchilla followed by thorough hand washing. To be surrounded by wheat fields, especially during harvest would be my idea of a nightmare!
A couple of weeks ago I had a session with a dietitian who works closely with my gastroenterologist, who is a celiac specialist. She said something which I have not read anywhere else, and I read as much as I can get my hands on. Basically she said that fibre from fruit and vegetables is all very well, but that the digestive tract specifically needs cereal fibre to be able get peristalsis moving decently. She said that people following a gluten free diet usually have too little cereal fibre in their diet, and that they need to pay attention to this to prevent constipation. Sufficient intake of water is also vital. Suitable sources of cereal fibre were brown rice and buckwheat. There were others, but I'm afraid I don't remember, as they weren't part of my normal diet. Gluten free pasta was of limited value as it usually tended to be low in fibre. Ditto cereal flakes, unless specially formulated to be high fibre.
Whilst I don't seem to feel too good if I eat too much cereal, and if I eat too much brown rice etc, I end up with D again, I have noticed that just a modest increase to my (previously very low)cereal intake seems to be keeping me relatively regular and reduces lower abdominal pain. Finding the right balance for me is still a work in progress though. I have a sachets of psyillium husk (spelling?) to use as a supplement if I need it, but am keeping reasonably regular without it so far. It has helped that the Genius bread I buy in the UK has recently be reformulated to have a much higher fibre content, even the white bread. I also have a high fibre breakfast cereal.
I should add that I didn't suffer C as badly as the above posters, as I would go once or twice a week. Still a painful interval though, with knock on effects of bloating and gas etc. C is new to me as I suffered from D until going gluten free. It took a few weeks for the D to properly settle down after starting the gluten free diet, and then my digestion became too sluggish.
For those interested, the dietitian also said that those following a dairy free diet due to lactose or casein intolerance must take a daily calcium supplement, and that iron intake of celiacs might be a bit on the low side too, even if your blood level was measured to be within the normal range. She was also generally supportive of probiotics.
Unfortunately because I live in the UK none of the others in my family have been gene tested (I am lucky enough to have access to private medicine, which is the only reason I was able to get it done). I think that in theory GPs can order the gene test, but in practice they don't because they are expensive and budgets are tight and, as you say, it is only an indicator of a possible diagnosis. Also some were diagnosed too long ago. I too would love to know what they all are. My daughters too.
Hopefully one day medical research will find some decent ways to pick up all levels of gluten sensitivity/celiac before people suffer many years of ill health and either get diagnosed or figure it out for themselves.
Our family is now dealing with another bad case. My cousin, whose mother and brother are both confirmed celiacs, has ignored mild/moderate indications of trouble with gluten for many years. Things have recently escalated sharply and he is suffering badly from cluster migraines and is also now severely hypothyroid. He also has psoriasis. He has no celiac antibodies. Thanks to the strong family history, he has pushed for an endoscopy appointment, but the appointment is very slow in coming through, which is not helpful as he is currently too unwell to work. Even if the endoscopy is eventually negative, I think he is going to trial the gluten free diet afterwards to see if it helps. It seems a strange thing to say, but we are all hoping that he gets a positive diagnosis. I think you all know what I mean!
Hi there. I went gluten fee back in September at the suggestion of a rheumatologist who was inclined to think I didn't have a connective tissue disease as thought by my GP(suggested polymyalgia rheumatica), and who I convinced that if it wasn't that, then it was a gluten issue, despite negative antibody tests. Well, the gluten free diet fixed the symptoms which had been acute for up to a year (high ESR, highish TSH, lack of periods, photosensitive hives, itchy skin and spotty scalp, burning facial rash, mystery swellings, painful varicose veins, abdominal pain, joint and muscle pain, loose floating yellow stools or D, frequent migraines with nausea or vomiting, frozen shoulder, numb arms and tingly hands, acute fatigue, ovarian cysts, chronic sinus pain and nasal drip), many of which had been rumbling in the background for over 25 years (migraines, abdominal pain, loose stools, fatigue, ovarian cysts), so we agreed that I would go and see a gastro for follow up.
Well, anyway, not being keen to be asked to do a gluten challenge, and still suffering from significant fatigue, I waited until I had been gluten free for about 6 months. It took that long for me to pluck up the energy and the courage to make the appointment. I went to see a highly respected celiac gastro who did some more blood tests, an endoscopy and colonoscopy. I managed a gluten challenge for 2 weeks. The first week wasn't too bad, just abdominal pain and grumbly gut and stools, but the second week was nasty - increasing joint aches and pains, headaches and bad fatigue. At the end of the second week I was felled by a bad migraine with awful stomach pain, nausea and D. When this happens to me I can't eat anything at all. Had to do the colonoscopy prep on the second day of this, with the procedures the day after.
The procedures themselves were fine, and I was very happy to eat some safe food again afterwards, starting slowly of course as my stomach had been upset. What I think is interesting is the results. Please bear in mind that gluten intolerance is rife in my Mother's family. We have 5 biopsy-diagnosed celiacs (aunts and cousins), then me and another cousin under investigation, my mother and children and some others are untested, but definitely gluten and lactose sensitive at the very least. A few others have their heads in the sand on the issue. There is not one single member of the family going across 5 generations who is free from suspicious symptoms.
Results were that I have zero antibodies to any of the tests (it was a full panel), except a tiny, tiny level of anti-tTG. I did have high IgM antibodies prior to going gluten free, which were anti-cardiolipin antibodies. Nothing to do with celiac, but they did go away once I went gluten free. I also had completely healthy villi. A bit of inflammation, that's all.
At this point you think, ok I am NCGI. That's fine. At least I know for sure there are no other gastro nasties and that any lingering pain can be dealt with by experimenting with my diet. Maybe the gluten challenge was a bit short, but as I couldn't have managed a longer challenge, that is not worth grumbling about. So I ask about the genetic test. Because of the strong family history, I assumed it would almost certainly be DQ2 or DQ8. But, no! Neither of those groups. We also have many allergies in the family, and I have a allergy to an antibiotic, so I enquire about allergy testing. Answer, yes we ran IgE tests to the common food antigens, and all were negative.
So, still NCGI, but ever so slightly gobsmacked that I could be negative on every single medical marker to gluten or wheat issues, and yet still have signficant symptoms which are alleviated by a gluten fee diet.
I would like everyone who is struggling with a diagnosis to be aware that it is possible for gluten to make you sick even if you are not celiac, nor in the genetic group which indicates a potential disposition to gluten intolerance.
And beware of gastro-enterologists who tell you that if your blood tests are negative, and even if your bloods and your endoscopy are negative, that you should carry on eating gluten because you are not celiac. This happened to me 3 years ago, and it cost me a great deal of worsening health and worry until I figured it all out with the help of this site, and the confidence given my knowledge of my family history. Second time round, having sought out a celiac-specialist, the Doctor has been much more supportive with a reasonably conclusive non-celiac result, and is nevertheless supportive of me continuing on a gluten free diet.
For those of you who have more scientific knowledge than I do, can anyone answer 2 questions (the doctor couldn't):
1) If I am not DQ2 or DQ8, does this mean that my maternal aunts or cousins would not be too? Or could that marker have been "lost" by the slightly removed family link?
2) I had been fasting (forced) for over 48 hours when the blood was drawn for the IgE allergy tests. Would this render the results invalid, or do IgE antibodies linger in the blood for longer than that?
Many thanks for reading this post, and apologies if it was too long. I hope it contributes at least a little to our informal understanding of this strange condition.
I finished a 2 week gluten challenge just over a week ago. After suffering from a worsening of headaches, body aches, stomach aches and severe fatigue just from exposure to gluten being cooked or toasted around me, while I was gluten free and recovering, I was really nervous about about doing a challenge. The first week was ok, with just abdominal pain and achiness which would pass before the next dose of gluten, and my energy levels held up.
During the second week though, the body pain and fatigue gradually kicked back in. Each day I felt worse than the previous one. The brain fog started up again too. By day 14 (a Saturday, so no work) I felt so bad, I just sat on the sofa all day doing nothing, and on Sunday I had a major migraine, D, major stomach pain and nausea, swelling etc. I couldn't eat a thing and retreated to bed for the best part of 2 days. Then I had to do the bowel prep for the colonoscopy, so didn't eat again until late Tuesday.
Was back at work on Wednesday feeling much better, having fasted for 3 days, and then returning to the gluten free diet. The abdominal pain and headaches took about a week to subside. Skin itchiness and breakouts still haven't quite got there, but they are improving. Ditto bloating/swelling and what I think might be lymph pain. Fatigue and body aches are still a significant problem, so it might be a while longer before I fully bounce back.
So the symptoms of a gluten challenge can build up quite subtly, and equally take a while to get back under control again. It is not something to be undertaken lightly. I felt that I couldn't have swallowed another mouthful of gluteny food by the end of two weeks. And most doctors seem to say that a gluten challenge should normally be for up to 3 months. Torture!
Having had a negative celiac blood test and endoscopy a couple of years ago, my GP sent me to a rheumatologist specialising in lupus thinking that I had another autoimmune disease. After lots more blood tests,including repeat celiac panel, it came back to looking at a gluten sensitivity again for lack of other plausible alternatives. Trialling a gluten free diet put my problems into a fast reverse. These included a photosenstive rash on my face,hives, mystery swellings etc, which took a couple of months to gradually resolve after starting the diet.
Most of my problems resolved after 6 months strictly gluten free, except for some continuing lower abdominal pain and tenderness. I am now about to have another endoscopy, following a short (2 weeks) gluten challenge. Now that length of challenge may not be sufficient to formally confirm celiac, but that and a colonoscopy will at least rule out any other co-existing conditions. The challenge has proved to me that gluten is indeed the enemy, as is dairy (at least for now), irrespective of the formal outcome of the endoscopy. I felt far too ill to contemplate a gluten challenge before now. I could only focus on getting better via the gluten free diet. And 2 weeks on gluten is all really I can take. A full 3 month challenge is quite out of the question. This will therefore be the final stage of my journey to "diagnosis".