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Unsure And Frustrated

AlexsMomAubrys2

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AlexsMomAubrys2 Newbie
AlexsMomAubrys2
Posted

Hello All.

My daughter just turned 3 and since birth has had problems with digestion. Started with extreme constipation for the first year (ish) and since then has been really bad diarreaha to the point of causing horrible blisters and rashes. The pediatrician ordered Edomysial Antibody which was Neg and a t-Transglutaminase IgA which was only 7 (weak positive), Immunoglobulin A, Qn, Serum which was 48 (in the normal range) and her DNA test was Neg. The specialist doesn't think that she has celiac and won't do the biopsy. I have given up hope on him, especially since he didn't even know all the symptoms for celiac. We are taking her to an Allergist on Monday (3/9) and hopefully will be able to get some answers.

Am I barking up the wrong tree with the celiac or has anyone experienced this sort of mislead. I feel like just taking her off of gluten and seeing if she is gets better. The tTG test was done in the evening, which she hadn't eaten in 5 hours, would it make a difference if she was to be retested a couple hours after eating gluten?

This weekends diet for her:

Sat - Puffs Cereal, Sandwich - Peanutbutter, (can't remember-sad)

Sunday - Pancakes, Sandwich - Peanutbutter, Stroganoff (noodles and sourcream)

She had a diarreha episode after each meal and a really bad (out of her pull up) Sunday night.

She is trying to potty train, but can't because she can't control her bowel movements. I am trying to find a solution for her. Any help or advice would be greatly appreciated.

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psawyer Proficient
psawyer
Posted

Hi, and welcome.

The time of day would not have much if any effect on the tTG-IgA test if gluten is being ingested on a regular basis. The antibody levels don't vary that quickly.

Unfortunately, testing is known to be less reliable in young children, so I would not take a negative as conclusive. Even in adults, false negatives can occur.

You can take her off gluten and observe the results. If the symptoms clear up, then stay gluten-free. If not, you will need to keep looking.

Keep in mind that gluten-intolerance often occurs in conjunction with other intolerances.

AlexsMomAubrys2 Newbie
AlexsMomAubrys2
Posted
  • Author
  psawyer said:
Hi, and welcome.

The time of day would not have much if any effect on the tTG-IgA test if gluten is being ingested on a regular basis. The antibody levels don't vary that quickly.

Unfortunately, testing is known to be less reliable in young children, so I would not take a negative as conclusive. Even in adults, false negatives can occur.

You can take her off gluten and observe the results. If the symptoms clear up, then stay gluten-free. If not, you will need to keep looking.

Keep in mind that gluten-intolerance often occurs in conjunction with other intolerances.

Thank you. I just feel in my gut that this is what she has. I have insisted on a full panel allergy test for her to make sure there isn't anything else we should be watching for as well.

If it is Celiac will she test positive for Wheat in the scratch test?

psawyer Proficient
psawyer
Posted
  AlexsMomAubrys2 said:
If it is Celiac will she test positive for Wheat in the scratch test?

Celiac and a wheat allergy are independent conditions. The scratch test will not tell you anything about celiac disease. It will tell you if she has an allergy to wheat.

AlexsMomAubrys2 Newbie
AlexsMomAubrys2
Posted
  • Author
  psawyer said:
Celiac and a wheat allergy are independent conditions. The scratch test will not tell you anything about celiac disease. It will tell you if she has an allergy to wheat.

Thanks again. I think my husband and I have decided to prepare and start a gluten free diet and see if it makes a difference. It is a good, healthy diet anyway and who couldn't eat better. :P

This is the only way to know for sure, especially at her age.

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