Toddler With Symptoms, Blood Tests Negative...help

[CN808]

I am new to this, so please excuse my use of terminology. My daughter (16 months) has had chronic diarhhea / then consitpation, severe bloating & cramping, among other symptoms since she was 8 months old. She has had all of the blood tests for food allergies, celiac, etc. and her condition is still undiagnosed. I am almost at the end of my rope with the doctors. My daughter is suffering and they are only treating the symptoms of her severe constipation (unscuccessfully) b/c her Celiac screen came back negative. We have had 3 x-rays of her stomach taken over the past few months, each showing a back up of stool through her entire digestive tract. I have noticed a bad smell on her breath, which the DR says is not related...but how can I ignore this??? I am not sure whether to demand an endoscopy at this point. Is it possible to have the blood work come back negative, but still have the diease? Everything I have read says that villi testing is the "gold standard" for diagnosis, but I though I would ask the ppl who know best -those who are suffering with the disease. Help! I am interested in knowing if it is possible to have negative blood test results but still have the disease. One other important fact -my dad was diangosed w/ Celiacs as a child....not sure how reliable the testing was back then, so who knows if he actually had it.

[RiceGuy]

Yes, it is not only possible to have Celiac disease and/or gluten intolerance and get a false negative on the tests, but that seems to be a very common experience.

Your child is fortunate not to have suffered for years before you began tracking it down. Basically, Celiac disease is very difficult to accurately diagnose, especially in small children. I would not rely on any tests to determine this at all, except the diet test. You haven't mentioned putting your child on a gluten-free diet, so I'm guessing you haven't tried that. I'd highly recommend doing so immediately. It doesn't require anything from any doctor, it's perfectly safe, and you will have the best diagnosis known to exist.

Your daughter also has not had years of eating gluten-containing foods, so changing the diet will be easier now. Probably much easier for her than for you, since you will need to get yourself informed as quickly as possible. Thankfully, you've found this site and forum, which will give you practically everything you need to get a good start in the right direction. Feel free to ask anytime you have questions, as we are always here to help - day or night.

[tyr6]

Does anyone know anywhere in the world where the Gluten Rectal challenge

test is performed at this time ?

(this test was mentioned in Dangerous grains, and elsewhere on the forum, but noone knows where it's done !!)

At Dr.Marsch's previous clinic in Manchester they don't do it anymore.

Thankyou very much !

[DonnaD]

" Help! I am interested in knowing if it is possible to have negative blood test results but still have the disease. "

Yes my daughter's blood was negative although they only ran IgA Tissue transglutaminase and serum Iga and did some RAST tests for wheat, milk, eggs which were also negative. We were a wheat free household because of my IBS. She could not tolerate milk at all when she was smaller.

She had one scope and biopsy which did not show 'enough' damage so had to eat wheat again then have it repeated 6 weeks ago this time more damage showed up , and the Consultant said he would issue the diagnosis based on the positive reaction to the gluten-free diet and the biopsy.

My daughter had a GA for the scope rather than be awake and it wasn't so bad.

Please insist that you get the endoscopy & biopsy before going to gluten-free to avoid a false negative. also ask for several samples to be taken, out of 3 only 1 had damaged villi so it would have been easy to miss.

[Guest nini]

It is not necessary to get a biopsy. It can easily be missed in children. There is no harm in trying the diet first. IF IT WORKS YOU HAVE YOUR ANSWER. If you are still unsure after a while, administer the gluten challenge (feed her lots of gluten after she's been gluten-free for a while) and watch how her body reacts.

She does not have to have full blown celiac to have a problem with gluten. TRY THE DIET. You do not need a Dr.s permission for this.

The biopsy is NOT the gold standard of diagnosis anymore. This is outdated information. The Dr.s that are clinging to this notion need an education in Gluten Intolerance...

The blood tests can be very inconclusive and inaccurate in children (and even adults)... the gluten free diet is a very effective easy way of finding out if this is the problem.

[nettiebeads]

I agree with those who recommend the diet challenge for your child. Non-invasive, and with children you usually get noticiable results fairly quickly. I haven't ever had any of the blood work or biopsies or anything like that. My gp dx'd me via the diet. No gluten = no D. Voila! Dx!! And believe me, I know I have celiac disease. Give me gluten and my body and mind are messed up for a week. The only test I'm interested in for myself and my dd is the gene testing. Anyhow, another mother here tried the diet for her toddler son and was impressed within two or three days! Her post was about two days ago. I can't remember her name, but you could search the site for her posts.

[celiackid?]

I am also fairly new to this...

After my daughter turned 1 she developed stomach cramping, severe constipation and a small rash around her mouth. She was treating for 6 months for constipation - until March 2005 she had blood in her stool and not eating. Finally blood work was done which showed her being borderline Celiac. Went on gluten-free diet for 6 months then re-tested. Well blood work came back showing no sign of celiac disease. She seemed to be doing well on the gluten-free diet until recently when she developed severe constipation again and blood iin stool which dr states is a fissue.

Went to see ped GI who said the only way to tell if she is Celiac is to have a biopsy. We are VERY concerned to put our 2 1/2 yr old "under" in order to perform test.

Are there any other tests to take? Want to find a dr who specializes in celiac disease in Palm Beach County FL. -- anyone have any suggestions for concerned parents?

[xaecies]

I am new to this, so please excuse my use of terminology. My daughter (16 months) has had chronic diarhhea / then consitpation, severe bloating & cramping, among other symptoms since she was 8 months old. She has had all of the blood tests for food allergies, celiac, etc. and her condition is still undiagnosed. I am almost at the end of my rope with the doctors. My daughter is suffering and they are only treating the symptoms of her severe constipation (unscuccessfully) b/c her Celiac screen came back negative. We have had 3 x-rays of her stomach taken over the past few months, each showing a back up of stool through her entire digestive tract. I have noticed a bad smell on her breath, which the DR says is not related...but how can I ignore this??? I am not sure whether to demand an endoscopy at this point. Is it possible to have the blood work come back negative, but still have the diease? Everything I have read says that villi testing is the "gold standard" for diagnosis, but I though I would ask the ppl who know best -those who are suffering with the disease. Help! I am interested in knowing if it is possible to have negative blood test results but still have the disease. One other important fact -my dad was diangosed w/ Celiacs as a child....not sure how reliable the testing was back then, so who knows if he actually had it.

4% of people with celiac don't have the antibodies that they test for. i would make them do a biopsy. if they wont just take her off wheat. they couldn't find anything wrong with me either and i had the same symptoms your daughter has. two weeks after i went off wheat my symptoms cleared up. also yogurt everyday helps tremendously!

now my identical twin boys (18 months) are getting tested one has the antibodies for celiac and the other doesn't

[BBadgero]

Don't forget to avoid barley and rye as well - this site addresses it all, but since you said you are new to this, realize that gluten comes in many forms.... I too never had blood tests, but with elimination have seen a night and day type improvement, even though I didn't always seem to get the symptoms before I found out....

There could be other food intol. as well, but from what I have read and know, gluten seems to cause the most common GI symptoms....

Good luck!