Going Off A Gf Diet In Order To Get Accurate Dx

[KarenAnne]

We need help coping with symptoms returning when my son goes back onto a gluten

diet in order for him to be conclusively tested.

My son (9yrs old) has been on a gluten-free diet since he was 5 1/2. His dad was diagnosed

six months previous with celiac disease. My son had similar symptoms: mainly lack

of bowel control and frequent potty accidents, very loose stools since he was born.

He was given the blood test which came back negative. However, since the gluten-free diet

helped him, we decided to conclude that he too had celiac disease -- I didn't want to

subject my son to the same invasive tests my husband went through.

Now, we've been told in order to get a conclusive test, he needs to go back to eating

gluten (doctor reccommends 1 piece of bread per day). I am very anxious about my

son coping with diahrea and potty accidents, especially while he is in school.

Does anyone have any suggestions -- even practical ones like reccommending

disposable underwear for nine year old or how to talk to his teachers about this?

Thanks.

[lovegrov]

No real practical advice but beware that most experts recommend the equivalent of two slices of bread for about three months for accurate results. If he gets really ill from this, that would be proof enough for me, though.

richard

[gf4life]

I went back on gluten for two months to get a biopsy, which ended up being negative. While I don't recommend it, you need to do what you feel is best for you and your son. I agree with Richard that one slice of bread might not be enough. I was heavily eating gluten daily (something like 6-8 slices of bread daily for two months) and it was not enough to cause damaged intestines to the point of being picked up on the biopsy, but boy was I sick. The worst symptoms went away once I was gluten free again, but the effects of that two months has continued for the past 14 months.

There is an article here on Celiac.com where it says 3 months might not be long enough, it may take 6 months or more back on gluten to show damage to the intestines. Here is the link to the article and a quote:

https://www.celiac.com/st_prod.html?p_prodi...-10105623494.ec

What about the patient who seeks a diagnosis, but has already eliminated gluten from the diet? It is very difficult for many patients to go back on a gluten-containing diet to secure a biopsy-proven diagnosis. This can often take three to six months or longer.

It doesn't state how much the person should eat, but I would assume they mean a normal gluten diet, not a reduced gluten diet. Which one slice of bread for a 9 year old would be a low gluten diet.

I wish you luck. My children (ages 5, 8 & 10) are not biopsy diagnosed, because their doctor and my husband and I agreed not to do the biopsy. They are so much healthier on the diet, and their symptoms return with gluten ingestion, so for us that is the answer.

God bless,

Mariann

[darlindeb25]

i am not doctor diagnosed although my sister and father are--my sis and i have been gluten-free for almost 4 yrs now and my dad has been since nov---i was offered free testing by a college, but my sis was told that i would have to return to gluten for testing and she told them, "my sister was so sick before going gluten-free that there is no one on god's green earth that could make her put gluten in her mouth, it isnt worth it to her to have a piece of paper saying she is something she already knows!"---that is exactly how i feel---i know i can never have gluten again--i even know beyond a shadow of the doubt that i am celiac and not just intolerant-----the decision is yours--i couldnt make myself that sick--i have too many things to do in my life now that i have my life back and no one is taking it away from me now--many of us do not have that slip of paper stating we are celiac---deb

[Nadtorious]

I honestly don't understand why some doctors insist on doing the scope after someone has improved on a gluten free diet already. Isn't that enough evidence? If gluten didn't cause as much pain as it does for us (even in tiny doses), and "eating gluten for three months" was really that easy, then what's the point of a gluten free diet to begin with?

Grrrrrrrr...........sorry, I know it's not advice, but putting a 9 year old through that just seems unfair. I know how much of my life I missed because I was always sick, but thankfully I had a healthy childhood.

Good luck-

Nadia

[lbsteenwyk]

KarenAnne

Have you considered doing Gene Testing through Enterolab? If your son tested positive for the gene, that would be pretty good evidence that he has it, although not 100% conclusive. If he has a negative gene test, that it is certain he does not have celiac.

[celiac3270]

I honestly don't understand why some doctors insist on doing the scope after someone has improved on a gluten free diet already. Isn't that enough evidence? If gluten didn't cause as much pain as it does for us (even in tiny doses), and "eating gluten for three months" was really that easy, then what's the point of a gluten free diet to begin with?

Grrrrrrrr...........sorry, I know it's not advice, but putting a 9 year old through that just seems unfair. I know how much of my life I missed because I was always sick, but thankfully I had a healthy childhood.

Good luck-

Nadia

It does seem so unfair to put someone, particularly a child, through that. I think that gluten challenges (going on gluten after getting a diagnosis and being on the diet for months, just to make sure that's what really makes you sick) are pointless. I do think, though, that there are advantages to getting an official diagnosis. For example, if KarenAnne's son ever wanted to do the tax deduction thing for celiac, he would need to be officially diagnosed. If the military wanted him to serve he would need an official diagnosis--otherwise they wouldn't respect his dietary needs--and if you have celiac, you can't serve in the military anyway, cause it's too difficult to accomodate to in that situation. But the point is, in some situations, an official diagnosis is necessary--however unfair that may seem, it's an unfortunate reality. So maybe it's better if he got the diagnosis now than having to go on gluten for a few months later in life after having maintained the diet for.......20 years or something.

[KarenAnne]

You all are so WONDERFUL! I just joined, I asked my question, and got so

many replies full of information, opinions and suggestions. I feel suddenly

supported, that I've found a community. THANK YOU. Any more suggestions

are welcome. We have decided to put off the appointment until summer

since I didn't want the symptoms to affect his time in school.

Please let me know more about the gene testing -- that is different from the

blood test he was given, right? And it would work even if you are on a gluten-free diet?

Is there a web site where I can get more info on gene testing for celiac?

We were told only the biopsy would give a conclusive diagnosis. They will do

the blood test first and then discuss whether further tests are needed.

Thank you,

Karen Anne

[gf4life]

We were told only the biopsy would give a conclusive diagnosis.

That is true. The gene test if available through Prometheus labs (in combination with the blood tests), also available separately through Enterolab, and Kimball Labs. It will only tell you if you have the genes to support the disease, it will not tell you if you actually have the disease, since some people carry the gene but never get sick from the disease.

I know what you mean about finally having a support group! I love this site, and all the people here. I also belong to Silly Yaks yahoo group(as are others here on this board!). They are both wonderful supportive groups of people and I don't think I would have survived the first few month being gluten-free without the support! Even after being on the site for a few years, there is always new stuff to learn and sharing experiences is so important. It makes it easier to deal with when you know that you are not the only one going through it. It is also very therapeutic to help others.

Your son has been gluten-free for about 4 years right? I would think that it would take more than a few months to cause enough damage to be seen on the biopsy. I told my kids that when they went on the gluten-free diet (if their Enterolab tests were positive) then they would stay on the diet until they were adults. Then if they want to go back on gluten and get retested that is up to them. But since I am their parent I am going to do what is best for them while they are children. By no means do they think that they might ever be able to eat gluten safely, but I am hoping by the time they are adults then the testing might have changed and maybe they won't have to have gluten to be retested.

There is a procedure called a rectal challenge, where they go into the rectum with a tube (sore of like a colonoscopy) and insert a solution containing gluten. Then they wait a few hours and go back in. If the area if damaged then they know your body is reacting to gluten. If there is no change in the tissue, then you don't have a problem with gluten. This seems a lot easier and safer than the endoscopy, but it hasn't seemed to catch on in the medical field. I don't really know why, but my guess is that people don't like the idea of the doctors sticking the tube up inside of them. I've had a colonoscopy, so I can sympathise. But I have also suffered terribly for months when I went back on gluten for the biopsy. I would choose the colonoscopy any day! It is one day of discomfort versus months of suffering agonizing symptoms. If you could only find a doctor who would do the rectal challenge then you would be set!

I wish you luck, and I am glad that your son has improved so much on the gluten-free diet.

God bless,

Mariann

[snoopylian]

I share your pain. I did a food trial with my 3 yr old son and found that gluten was the cause for his eczema or at least a huge contributor. I put him on a gluten-free diet and not only did his eczema cleared up, but he stopped having night terrors, was no longer crying and whinny all the time - he was actually quiet a sweety pie with a great personality, he became more physically active and began acting like a little boy, and that crack on the bottom of his ear that we could never get to heal healed right up. I put him back on gluten to get an official dr. diagnosis. (he was gluten-free for four months) After three months of a completely "normal" diet, and constantly feeling like I was poisioning my child, his blood results came back negative and the dr. did not advise on a biopsy.

During the "normal" diet time his symptoms returned along with new problems - he began breaking out in tiny hives that looked like ant bites. He developed several food allergies/intolerances, an annoying constant sniffle/runny nose, as well as a neurological eye blinking thing.

After several months of being on a gluten-free diet his skin has still not cleared up like it did when we first went gluten-free , the sniffle thing is driving us crazy, benedryl, zyrtek not helping, and the hives - still coming and going. I have found that eliminating all sweets have helped -- but that's another issue.

Anyway...while yes, I think an official diagnosis is something we would like to have for things such as the military -- right now it is not worth it to me. In ten years the medical information and community will have evolved greatly where Celiac is concerned so I will wait till we must have an official diagnosis.