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
Thanks for your reply, soy and corn were the next suspects on my list. It's good to know I am on the right track. During the week that the tummy aches flared up, my husband did the shopping and got soy milk instead of rice milk. He is back on rice milk, but the tummy aches are still present.
Cross contamination is not likely at home, but I do wonder about kindergarten. He has become a finger nail biter, and I wonder if he might be picking up gluten somehow from things that other kids touch after they have eaten. We have holidays coming soon,with six weeks off pre-school and if the symptoms disappear, that might answer the question.
He doesn't have any oats, as they are not recommended for coeliacs where we live. I have wondered about other grains - but hope it's not that. It will really put the squeeze on if he can't have rice. I will get onto systematically keeping a food log.
My son was diagnosed with Coeliac disease December 2012 (TTG 262 and positive biopsy). He was gluten free immediately after. Big improvement very quickly - bloating, tummy aches cleared up and normal, formed bowel motions.
Around April, the bloating started to return occasionally. Saw a dietitian who suggested lactose intolerance (never tested him though) and we took him off lactose. Can't say it made an obvious difference to the bloating.
In May, tummy aches returned several days in a row, plus more bloating - our family doctor put him on Ranitidine/Zantac. That same week he had his specialist follow up. Specialist took him off Ranitidine, disputed likelihood of lactose intolerance (said that the villi weren't blunted enough). No explanation for the bloating or tummy aches. Specialist did a follow up TTG, which was "normal" (9), also tested for nutrient deficiencies and anaemia - all normal.
Hoping that it would eventually solve the problem, and since it wasn't hard, we kept him off lactose.
July onwards, the bloating becomes a daily event. I mention it at the Specialist follow up again, and the Specialist makes a note that I said he was bloated, but that's all.
September - took him off all dairy, which co-incided with being dry overnight for the first time ever a few days later. I don't know if he actually does have a dairy intolerance, but he seems to be more likely to have a dry night if he has not had dairy. He is already additive and preservative free as we hardly eat any processed food - most is home cooked.
Mid October, the tummy aches become daily - worse in the late afternoon and always present when he wakes in the morning. His appetite is still good.
Early November, I take him back to the family doctor, with bloating and tummy aches, who again prescribes Ranitidine (Zantac). Has now been on Ranitidine for a few days, but it's not clear whether this is working. And if it is, should a 4 year old really be on Ranitidine???
Help! Was it just naive of me to think that Coeliac + gluten-free = healthy, well child?
I really did not expect to still be dealing with bloating and tummy aches nearly a year after being gluten-free. I don't know what to do next, it seems like we are being fobbed off.
*By the way, our specialist is a general paediatrician who has "an interest" in coeliac disease, as our local health board doesn't have paediatric gastro services. We don't even have access to state funded dietitian. * Our family doctor is a gluten believer - she will recommend gluten-free diets to non-coeliacs. I'm just not very confident in her management of our child coeliac.
".....look for evidence of gluten harm: this is to make the diagnosis of gluten-sensitivity (reactions to gluten without the gut damage). Anti gliadin antibody IgG (Also called IgG-gliadin antibody) Anti gliadin antibody IgA (Also called IgA-gliadin antibody)
A positive test shows that you have an immune reaction to gluten. This might not be causing symptoms yet. Most gluten-sensitive people have a high IgG-gliadin test."
I did wonder why the blood tests were delayed, but am glad to hear that you are getting them done sooner. What will your next move be after the blood test results are back? If you need to go for a biopsy, you will need to keep her on gluten until then, unfortunately
Hi ampmomof3, bear with me, this turned out to be a much longer post than intended!
"What made you test for celiac? Did you test after doing the elimination diet? "
He was tested for coeliac antibodies as he started the elimination diet. Our dietitian was very clued up, noticed his big bloated tummy (which our GP just the week before said was "lack of musculature") and wanted to have coeliac excluded as a reason for his irritable behaviour,lack of sleep & digestive problems. In retrospect, we realised his bowel motions hadn't been normal for some time before this and his height gain had tailed off, all of which pointed to celiac disease.
"He had the rash for five years(dx as eczema, dermatitis, etc) and the only treatment that helped was eliminating gluten! The rash was gone in two weeks!! "
That seems like pretty compelling evidence of gluten intolerance. It might be worthwhile reading up on Alessio Fasano or Rodney Ford's work in this area.
"I had him tested for celiac (tTG IGA) and he was just under the weak positive(so it was negative)...but
we had been gluten free for two weeks"
I wonder if being off gluten may have invalidated the antibody test. Did you mention to your doctor that your son had been off gluten for two weeks prior to the test? I guess that you would have two options, either re-introduce gluten for some time and then test bloods again, or continue to eliminate gluten and observe symptom changes. Either way, it would be good to do proceed with monitoring from your doctor so that you have documentation (ie, height/weight changes, clinical observation of rash etc if you decide to stay off gluten). At this point it is totally up to you whether re-introduce gluten or not. This was something I didn't really appreciate fully when we were getting biopsies etc done.
"I'm thinking we were actually eating alot less gluten because of feingold."
Yes, I agree. I think that because the elimination diet cuts out a lot of processed food, the gluten content is much lower than a standard diet.
Another resource you might find worth looking into if you haven't already is www.fedup.com.au which has factsheets on food additives and the symptoms that they may cause and anecdotes from people who have tried the RPAH, FAILSAFE or Feingold. The elimination diet is a lot of work, and I hope that you see some positive results with behaviour to make it all worthwhile. Good luck to you with sorting this all out!
The blood tests are not nice, but with a younger child, I found them easier to manage. My 9 month old was blood tested recently, by heel prick. He was pretty calm about it. My 3 year old has had two sets of blood tests for celiac antibodies, the first was a finger prick which took longer but was less traumatic, the second time they did venepuncture, and that was much faster but it was more upsetting for him. It was the same panel of tests each time.
Rather than taking pot-luck, I would call the blood collection centre beforehand to check that they have someone there who is good with kids.
tTG antibodies are usually associated with coeliac disease, but can be elevated in other disease processes too. They are a marker of tissue inflammation usually involving the gut.
endomysial antibodies (EMA) are highly specific to coeliac disease, and the skin manifestation of gluten intolerance, dermatitis herpetiformis. A positive result for EMA would point to celiac disease or DH.
IgA is tested to ensure that the patient is not IgA deficient. If a coeliac individual has low total IgA, then they may not be able to produce the antibodies that the coeliac panel is based on, therefore the results of the coeliac panel may be falsely negative.
We had to wait 2 months between my 3 year old son's first positive blood test (which was highly elevated) and his first biopsy. The biopsy turned out to be inconclusive, much to the surprise of the gastroenterologists. They fully expected to see damage, but just didn't. Their next step for us was a follow up biopsy, some three months later. All this time, he has been on gluten (with the exception of 10 days after biopsy 1). I agree it is hard to keep them on gluten when you are just thinking of how much damage/suffering it could be causing, but I would say that for at least the first biopsy you must remain on gluten. A clear diagnosis of coeliac is much easier to deal with than an inconclusive one (and a follow up biopsy ..) If your child's symptoms are really affecting their quality of life, there should be a case for reducing the waiting time.
Yes, we did an elimination diet in June/July/August and cut out most food additives, as well as salicylates, amines and glutamates. Our diet was supervised by a dietitian and based on the Royal Prince Alfred Elimination diet. Similar to Sue Fengate's FAILSAFE diet. We saw some very striking results with reduced hyperactivity and better compliance also sleep was better. At this time, our son had tested highly positive for coeliac antibodies (TTG 262) and was awaiting biopsy. I did a literature search, and there does seem to be some evidence that coeliacs are more affected by the types of food chemicals that are eliminated by the RPAH diet protocol.
Thanks for your response. When we had our consultation in October with the gastroenterologist to discuss the positive TTG/negative biopsy, she mentioned that he had been tested for EMA as well, which is specific only to coeliac disease. I believe at the very least he has gluten intolerance; whether or not he has "coeliac disease" will depend on the biopsy this Friday. Either way, we have decided he will be going on a gluten free diet after this second biopsy. There definitely will not be a 3rd biopsy. In the meantime I have read a couple of Rodney Ford's books and in retrospect, we should have refused the second biopsy and just taken him off gluten months ago. Our gastroenterologist was very insistent that a second biopsy was necessary - this specialist is in fact the Head of Paediatric Gastroenterology at our country's leading children's hospital - which made it difficult to refuse the procedure.
When he was off gluten in early September, his improvement was very rapid. His bloated tummy went away and the bowel motions firmed up. For the first time ever, he complained that it was hard to do a poo! His sleeping improved and we thought he seemed happier and less irritable. I am really looking forward to seeing what happens over the next few weeks, once he is off gluten. It makes me feel quite sad that he has had such a rough year; I really wish that I had known enough at the time to disagree over the need for a second biopsy. However, he only has a few more days on gluten, and then he's done with it for good.
Thanks for your response. Yes, it was the IgA TTG. Endoscopy/biopsy is on Friday, so I suppose there will be a chance then to talk with the Gastroenterologist about the situation. In the meantime, I will perhaps look into crohn's and other auto immune disorders
We wondered whether we'd changed his diet without realising, but in fact in the last three months, while waiting for the 2nd biopsy, we've made absolutely no restrictions on gluten (though it makes me feel sick thinking what gluten is doing to him). Is there anything else apart from gluten which influences TTG?
Hi all, thanks for your replies. The specialist told us that he was their "one-child-a-year" who has positive blood test, but nothing conclusive on biopsy. I don't think that there were any faults with the technical aspects of the biopsy; there were 10 samples taken altogether and the scope went as far as the 3rd part of the duodenum.
"My first thought is - even if your son eats gluten for the next three months it does not guarantee a positive biopsy."
That idea has crossed my mind. Which then leads to the question of what we would do if that happened. Most likely we'd refuse a 3rd biopsy and take him off gluten. Seems then that the only justification for a 2nd biopsy is to achieve the "gold standard" for diagnosis.
"Positive Antibodies - do you know which tests were positive?"
Yes - tTG was 262 and DGP was 170. I understand that these are quite specific markers for Coeliac?
"Have you told the doctor how tough the challenge has been? Perhaps they will diagnose once they have the added information of the dietary response. If the doctor continues to push for another endo, I'd look for another doctor. It would then be a clear case of the doctor sticking to outdated protocols as there are doctors that will diagnose based on the items you have listed."
We met with the gastroenterologist last Monday, so 5 weeks after initial biopsy, 4 weeks after his 10 days off gluten. We did explain that his symptoms improved quickly off gluten and that they are back with gluten. I am going to see whether we can get a second opinion, as it does seem like the specialist is focussing on the gold standard of biopsy, rather than what is in the patient's best interests.
We live in New Zealand. We have a family history auto-immune disorders, with one diagnosed celiac (my sister).
My 3 year old son has had classical symptoms of celiac disease (bloating, diarrhoea, tummy pain, irritable, lethargic) since Feb this year. He was eventually blood tested in June and came back with positive antibodies, which were very high. He had his biopsy on August 31st and on 10th September we were told the result was "inconclusive" - no flattening of villi but some cellular changes. In the meantime we had taken him off gluten and he improved rapidly during that 10 day period. The specialist has recommended that we re-introduce gluten so that he could undergo another biopsy, which is scheduled for no less than 3 months time, since we had taken him off gluten (for 10 days!!).
Has been back on gluten now for a month and has big bloated tummy, twice daily diarrhoea, constantly complaining of needing to eat, seems to always be in tears. He is pretty miserable. The second biopsy will not be until late January and I am starting to wonder if we may just forego it, and assume he is gluten intolerant on the basis of the blood test. Another three and half months of gluten seems like torture.
Is there any point to repeating the biopsy in view of his symptoms and positive blood test?
What if it also comes back negative?