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mairin

Gluten Challenge Questions

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I took my son off gluten exactly 6 months ago. His sister is diagnosed via biopsy, plus two positive blood tests, for Celiac. Both my son and daughter are tiny. My DD has been gluten-free for 1 year since her diagnosis, and has gained less than 4 lbs. She is still at 3%ile for weight, however, has "shot up" to 25%ile for height. My middle DD is average size and weight. Before going gluten-free, my son was 36 lbs. 6 months later, he is only 37 lb. He will be 6 mid-May, so that puts him less than the 3%ile for weight. He has grown in height but I have to wait to go to the Dr to properly measure his height. He has tested negative twice on two blood tests, second one included ensuring he was not IGA deficient.

We took my son off gluten because of his short stature/small size, because his sister is a Celiac, and because he as showing various signs: soft stools, lack of focus in school, tics, stinky farts, "allergy eyes" were the main ones. He does not have behavior issues like his sister. Most of these signs are gone with being gluten-free, but he still does fool around in Kindergarten, but he is a boy!

Today we put him back on gluten mostly because he has not put on weight nor does it seem he has grown in height significantly. It is also difficult to know if he is paying more attention and is more focused because he is gluten-free or because he is now familiar with the school routine and expectations. He is bright and has always had incredible energy. He is a star athlete, both before and after going gluten-free.

I am keeping a food diary, with possible reactions. Today, he peed his pants on his way back from skiing. He will often say he has to pee when we are in the car but he has always been able to "hold it". Today he announced he needed to pee, and couldn't wait. Not sure if that was a reaction to the french fries and chicken fingers or not. But it is recorded.

I just wish my little boy would grow. He is so small. His new pants I bought him were size 3X and 4. He is skin and bones. I'll be watching for the extended tummy and he is under orders not to flush the toilet so I can check his poops. They've been such nice poops for the last 6 months!

My questions:

How much gluten does he need ingest each day? We are a mostly gluten-free house (except for toast and pasta) so it is a bit of work to ensure he does get gluten.

If I want to again have his blood tested, how long does he need to be on gluten?

Also re negative blood tests, can one be "barely negative", ie close to positive? I asked for the specific results from my son's blood tests, but was told negative is negative, no actual "scores". What is strange is my DD just got tested and she showed a "weak positive" for her TTG, according to the pedi GI who states that the test is too sensitive. If there is a weak positive, shouldn't there be a weak negative? it is not like you are pregnant or not pregnant, but there are varying degrees of results are there not, for the blood tests?

Note, I will take him off gluten if any of his previous signs reappear. We are just not sure that we have seen enough changes to continue gluten-free. We might have been scared into going gluten-free because of our daughter's slow and insidious descent into this disease.

Thanks and sorry for rambling.

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Hey Mairin . . .

I just went through this with my son. My daughter was diagnosed a little over a year ago. My son's tTG was negative but since he is small for his age (at the time he was 8 Years and 42.5 lbs) we opted (with the pedGi in agreement) to try 6 months gluten-free. His size was his only "symptom". There were no behavioural or GI issues. After 6 months, he only gained 2 pounds. He is now back on gluten (with the GI's permission) and I, too, am watching for any changes that I didn't notice before. I haven't come up with anything yet, but I will not hesitate to pull it back out of his diet if I think it will help. At this point, we are looking for other reasons for his poor growth (he has always been below the 5th percentile).

Since you are not trying to get him prepared for a blood test, I would say there is no set amount of gluten that you should try to get in to him. Our house has a LOT less gluten in it than it did 13 months ago. There are a few items that I have allowed back in and he is now allowed to buy lunch at school, but I'm not trying to make him eat gluten. I think just keeping a diary will be sufficient.

You might want to check for allergies if you haven't done so already which could give you some of the symptoms you listed. Be careful with your "allergy eyes" symptom since he was gluten-free for winter and now spring (read pollen) is in the air!!

I would ask for a copy of his blood test for your records. You are entitled to them. Then you can see for yourself what the numbers actually are. They could actually have no numbers though and just have read something like a "less than 3" where 3 is the lowest they can detect or something like that. Also, you'll have them for comparison in the future since even though he is negative now, he should still be screened on a regular basis since his sibling has been diagnosed.

And just an FYI . . . we are trying to get my son to drink an ensure everyday after school to get a few more calories in him.


Janet

Experience is what you get when you didn't get what you wanted.

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Mairen, you are telling us that without gluten a lot of symptoms disappeared.

soft stools, lack of focus in school, tics, stinky farts, "allergy eyes"

Those are pretty major problems, as far as I am concerned. I realize he hasn't gained much weight. But he grew.

Personally, it sounds like he responded well to the diet. His villi may have been in pretty bad shape, and you are expecting too much too soon. First the villi need to heal before major growth/weight gain can occur. Plus, maybe he is just genetically predisposed to being slim.

I think in both your cases it is a mistake to put your sons back on gluten. What do you expect to gain by doing that? The gluten-free diet is a healthy diet, nobody needs gluten grains to be healthy. In my opinion, those boys sound like they are better off without gluten. Not to mention the higher risk of cc for your daughters.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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Hugs and Good luck! I hope you find a way to help him feel better soon - i also don't think he shoud try gluten. My DD is similair with negative TTG Results. However with additional testing we found she had positive results to the antigliadin IGA and AntiGliadin IGG, these may not be consistent for celiac in all cases - but for us it shows her GLiadin allergy to gluten and milk.

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Mairen, you are telling us that without gluten a lot of symptoms disappeared.

Those are pretty major problems, as far as I am concerned. I realize he hasn't gained much weight. But he grew.

Personally, it sounds like he responded well to the diet. His villi may have been in pretty bad shape, and you are expecting too much too soon. First the villi need to heal before major growth/weight gain can occur. Plus, maybe he is just genetically predisposed to being slim.

I think in both your cases it is a mistake to put your sons back on gluten. What do you expect to gain by doing that? The gluten-free diet is a healthy diet, nobody needs gluten grains to be healthy. In my opinion, those boys sound like they are better off without gluten. Not to mention the higher risk of cc for your daughters.

My son is back on gluten because his rate of growth actually slowed down on a gluten-free diet. He did not care for most of the gluten-free alternative bread products. Just as an example, gluten-free he would eat one plain hot dog (no bun we tried a few gluten-free alternatives but he didn't like them) along with a little fruit and some chips for lunch. Now, he will eat two hot dogs with buns and the same fruit and and the same chips. He was only on the diet to see if he would gain weight and he didn't. He is well aware that if my daughter starts having problems because of cc, the gluten items (at this time, a box of cereal, bread/buns, and some ritz crackers) will be gone.

The GI was (and still is) concerned about his weight/height but didn't want to scope because he thought there was a high probability of not finding anything or not finding the "right" spot. I appreciated the fact that he didn't want to jump right in and scope him. The doc was also leary of just "waiting" to see if anything developed other than low weight/small stature. My husband and I were actually the ones that suggested the trial diet. And we all agreed that 6 months would be long enough to tell a difference. The GI actually thought that if gluten was the problem, we would start seeing positive results in the second month some time.


Janet

Experience is what you get when you didn't get what you wanted.

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