I Cannot Do This Gluten Challenge Anymore!

[jmoody74]

I am going crazy! My 10 year old was gluten free for 5 months. Then we were FINALLY able to get him an appt with the pediatric GI doctor. He scheduled him for biopsies but said we have to put him back on gluten for 8 weeks and then do the biopsy. Well, it has only been two weeks. The first week was ok, not too much trouble. This past week has been a living hell. He is in so much pain, diarrhea for a week straight now and last night he started vomiting. I don't think I can do this for another 6 weeks. Anyone got any advice or help to give? I would appreciate any words of wisdom right now. I really can't stand to see him like this any longer. My husband is ready to call the doctor and tell him we quit! Please help

Thanks

[rinne]

I'm so sorry to hear that, how awful to watch him suffering.

There are doctors that will use a dietary response as a diagnostic tool, it seems obvious that if he was doing well without gluten and now is so ill consuming it that he shouldn't have gluten. I don't know if your doctor is one of them but certainly he should be updated on your son's response.

I know many people feel the gluten challenge is necessary and that doctors want to see the villi damaged before they confirm celiac but thinking about it in another way makes it clear , to me, that there is something very wrong with our medical system.

The biopsy looks for damage that is graded on the Marsh scale from 1 to 4, 1 the least damage, 4 the most damage. The problem is that the damage doesn't show until you are at 3 and by the time you get to 4 your villi may never heal. So, people are sick before there is even a 1 to read, which they don't, and essentially what they are diagnosing is damage and if they miss the damage which, unless they take 8 - 10 samples, they often do the result is people are left with further damage and no diagnosis of celiac. Quite often they are simply given a diagnosis of IBS or as I have seen it referred to "IBS - I BE STUPID" to believe you.

IMO doctors know so little about diet that they are not people to be consulted about it.

I have a brother and sister diagnosed with Celiac and another brother and I have been so ill that even without a diagnosis we have gone gluten free. I would never eat gluten to damage myself so that a doctor can tell me that I shouldn't eat gluten.

My sister, the first one diagnosed with Celiac, had been ill for a long time prior to that diagnosis and had been told she had IBS. When the doctor told her she had Celiac, he told her to avoid wheat, he said nothing about gluten, rye, barley...... For five years she continued to consume gluten in all the various ways it is hidden and got sicker and sicker, thinking all the time it was the IBS.

Trust yourself.

[JennyC]

I too started my son on the gluten-free diet before seeing the pediatric GI, based off of his blood test results. I was told to do the gluten challenge with my son, but I went home to think it over. After getting advice from the wonderful people on this board and doing some thinking of my own I decided against the biopsy. The gluten-free diet is something that your family can manage on your own. You can get follow up testing (like diabetes, tTG, ect) done through other doctors than a pediatric GI, such as naturalists, internists, and your son's pediatrician. Blood work and dietary response is becoming a more accepted way of diagnosing celiac disease, so if your son has those factors then it is nearly unquestionably celiac disease.

Lastly, this is the concept that made me fully decide against the biopsy: If your son's biopsy comes back negative are you going to put him back on gluten?

After reading about your son's symptoms, I can guess that the answer to that question is no. If the answer is no, then why put him through hell to do a test that is not going to make any difference in his life style? If the diagnostic measures that your family has done for your son are not enough for him as he gets older, then he can make the choice to the gluten challenge and biopsy when and if he desires to do so.

I hope this helps. Best wishes.

[kbtoyssni]

It sounds to me that you don't need to do a biopsy. Why put him through that much pain just to get a "medical" diagnosis? Based on his symptoms, I'd say you've already got your diagnosis.

I had been gluten-free for too long when I did my blood test so it came back negative. At that point I had the option of eating gluten for another few months just to get an "official" diagnosis on my record or to stop eating gluten, start healing and get my life back. I chose the second option.

[Ursa Major]

You can simply not feed the poor little guy gluten for another six weeks! Seeing that he already has chronic diarrhea and vomiting, that could kill him. Seriously, I am NOT exaggerating. You also might do permanent damage, besides the fact that he would likely be quite malnourished by then.

Please put him back on the gluten-free diet immediately, so he can feel better. Why destroy his villi again after he had healed already? That is plain cruel. I don't understand doctors who expect that of you.

Your husband is right, call it quits. Tell the doctor what happened, and cancel the biopsy. You have your answer anyway.

[jmoody74]

I also wanted to add a few points I don't think I mentioned before.

My primary physician put my son on gluten-free diet before we saw the pediatric GI. He ended up being on that gluten-free diet for 5 months. Then the pediatric GI did celiac blood work. The plan was that if it came pack positive we would do a biopsy right away. If it came back negative, we could give him gluten for 8 to 10 weeks and then do a biopsy. Needless to say, the bloodwork came back negative (probably because he was gluten-free for 5 months). So now it has been 18 days since introducing gluten and I am very close to just cancelling the biopsy. Seeing him in this much pain just doesn't seem worth it.

Also, does anyone think it would help to do another blood panel now that he is eating gluten again and it is obviously back in his system? That makes sense to me but I am not a doctor and very new at this celiac stuff.

[Ursa Major]

Even eliminating gluten for two weeks can result in a false negative blood test, never mind five months! Of course it would be negative after that much time. Both your doctor and ped GI are extremely uninformed when it comes to celiac disease.

And no, in order to get a positive test you need to be back on gluten for at least three to six months (meaning that even giving your son gluten for eight weeks would likely still result in false negatives). Doing the test now would be completely useless.

You can still test with Open Original Shared Link, their results will still be accurate for a year after eliminating gluten, since they are a lot more sensitive than the blood tests.

[jmoody74]

Thanks for all the replies. They are very helpful, moreso than you'll ever know. I have given my son gluten for the last time

I have never heard of Enterolab before. Is this company legit/reliable/worth the money? It sounds almost too good to be true, gluten sensitivity testing without needles/biopsies or having to torture him with gluten. Have many of you tried this with satisfying results? I may have to have a fund raiser just to pay for it, but at least I may have peace of mind afterwards and not guilt.

Thanks again

[TinkerbellSwt]

I have the same dilemma with my son. He is now 2 and has been gluten free since birth. First by circumstance, his formula was gluten free, then once I found out about my celiacs, he stayed gluten free when eating our foods too. I just dont have the heart to do what the doc is asking you to do to your son. The poor guy is suffering so they can get a diagnosis? Seems like you already have it. Of course, it is always up to you, he is your son. My son will never get gluten, we are having a gene test done next month (we have been waiting months for this appt) to see if the genes are even there, but either way my son will be basically gluten free, as I allow no gluten in my house regardless.

My dh is also gluten free just by living here, he can consume what he likes at work, once in the house all is gluten free though.. he doesnt mind. So either way, my son will remain gluten free, I will not bring it into the house just b/c he doesnt have celiac, I do, so no gluten!

You will do whats best for your son, if he is in that much pain though, I would seriously consider just getting him off the gluten and leaving it be like that for a while....

[rinne]

Thanks for all the replies. They are very helpful, moreso than you'll ever know. I have given my son gluten for the last time

I have never heard of Enterolab before. Is this company legit/reliable/worth the money? It sounds almost too good to be true, gluten sensitivity testing without needles/biopsies or having to torture him with gluten. Have many of you tried this with satisfying results? I may have to have a fund raiser just to pay for it, but at least I may have peace of mind afterwards and not guilt.

Thanks again

I am glad to know that you are trusting yourself to make your own decision about your son's response to gluten. I hope that he feels better soon.

This board is an incredible resource, I hope that you will make use of it.

Sorry, I can't help you with the Enterlab as I never pursued it but I know there are many here who have. You could also try the search function and see what comes up.

[Karen B.]

I think you owe the GI doc a call and let him know the extreme reaction your child is having to the reintroduction of gluten. Given his reaction, surely the doc would not want you to continue the challenge. It would be like challenging someone with a peanut allergy to see if they really need an Epi-Pen.

Frequently docs do not give you warnings ahead of time on what to expect because they don't want "plant" ideas. I understand the basic lab rat science behind the idea but I'm not a lab rat. But I have had a doctor tell me he thought if it got that bad, I'd call him (one of the reasons I now have a woman doc).

[mftnchn]

Yes, and also what does your son want? He is 10 should be able to express a clear opinion.

If a doctor recommends a child go through any more of this suffering he should not be a doctor in my opinion.

[Ed-G]

Just to add my two cents in, I was diagnosed for celiac disease when I was about two years old by the family pediatrician. This was back in 1958/59, and there were none of the current tests available. The only thing available was the elimination diet. And after cutting everything out except bananas and dry curd cottage cheese, my symptoms dramaticly improved.

Because of that, I would never have a gluten challenge at this time. I am not going to go through a lot of trouble and pain (and a dramatic loss of weight) just to get an "official" confirmation of what I already know. And I will most likely not get that confirmation -- the best I will ever get is inconclusive. And I would never suggest that anyone who was gluten free for some time to go back and endure a lot of pain just for a test that will yield disappointing results.

Ed in MD

[Teacher1958]

This makes me so angry!!! When my son was little, he had a really bad case of the intestinal flu. We took him to the ER, and they wouldn't let us leave until he was properly hydrated! Why on Earth would they force your son to go through a process that is so dangerous that it could cause him to dehydrate and lower his electrolytes??? That is terrible! I've been gluten-free for 5 weeks. My doctor suggested I do the gluten challenge, and I told her that I absolutely would not. After 42 years, who knows what's going on inside my body, but I am going to take my chances, because I've never felt this good before in my life. My heart goes out to you, your son, and your husband.