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Another Coincidence? Or Another Piece To The Puzzle?


Maggs05

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Maggs05 Rookie

It looks like we may have another piece of the puzzle that points to celiacs.

Ds has been gluten free for almost 5 weeks now, he has gained 2 lbs in that time. He has never gained weight the way average kids do. He's lucky if he gains a lb in a year, let alone 2 in 5 weeks.

So far his indicators are:

a) Initially slow weight gain & loss at times.

B) Small stature.

c) Iron deficient (even though he eats plenty of iron rich foods and takes a multi-vitamin with iron).

d) Before gluten free - Severe cramping and diarrhea.

e) After gluten free - No symptoms and vast weight gain.

I'm still holding out hope that he isn't Celiacs, but it is becoming more and more apparent that indeed it probably is.


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Amyleigh0007 Enthusiast

That is awesome!!! It sounds like his body is healing and he is absorbing his nutrients. One of the first improvements we saw with my son was the weight gain too.

ang1e0251 Contributor

I would say you just found the biggest, most humongous piece of the puzzle! Growth and development are the keystones of health. Congratulations, Mom!

CeliacMom2008 Enthusiast

Sorry if you posted this before...

Have you had him tested for Celiac?

Darn210 Enthusiast

I think you're on the right track!! Glad he's gaining weight.

I'm still holding out hope that he isn't Celiacs, but it is becoming more and more apparent that indeed it probably is.

I just want to say that this feeling is normal and you'll get past it. I was really hoping my daughter didn't have Celiac. Then I started asking myself . . . "Well, what is it that I want her to have instead?" At the time she was on an antacid and had been for a while. She was only six at the time. Did I really want her on a prescription antacid for the rest of her life? Plus, the increase awareness, changes in food labeling, mainstream food manufacturers getting on board . . . it's getting a lot easier to manage this diet. A friend of mine had to do a gluten-free trial diet with her son about 7 years ago (didn't have to stay on it though). She can't believe the number of products that are available now.

Maggs05 Rookie
Sorry if you posted this before...

Have you had him tested for Celiac?

No not yet. We are just in the initial phases of it. I live in Canada and unfortunately it can take a very long time to get through the system.

We just seen the ped (after waiting on the referral from our family dr.) this morning. Ds is currently back on gluten for 6 weeks and then will have the blood test. Unfortunately the blood test is not covered by OHIP (our universal health coverage). It just changed as of Aug. 1st. That's my luck. The test is $150.00.

Once the results are back and depending on what it indicates, ds will be referred to a ped-gastro, which is two hours away from us to have the biopsy.

I am currently waiting on baited breath, for any signs and symptoms. Ds had lunch and within two hours he said his tummy hurt. My heart sank. He did have a bm, but it was normal. So I sit here continuing to hope that his symptoms do not return.

CeliacMom2008 Enthusiast

I'm so sorry for what you're having to go through. I figured he'd be back on gluten once you saw the doctor. If he has Celiac the next few weeks might be really rough on both of you (because of the gluten in his diet). Hang in there and don't be afraid to come here to rant and even cry on a virtual shoulder or two. Stay focused on the goal - figuring out what made your son so sick.

If you find out he does indeed have it, don't fret. It can be a challenge, but the diet is doable. Our whole family is gluten free at home (only my son has Celiac though), and none of us minds. It just takes time to learn how to do it.

Good luck!


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Maggs05 Rookie

Thanks for the reply. It's always nice to know that you can come here and get support.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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