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New Here. Toddler Gluten Free For Three Weeks.

mamatomany

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mamatomany Newbie
mamatomany
Posted

I am the adoptive mother to a wonderful 21 month old boy who has had his share of medical troubles. He has sickle cell disease, asthma, and multiple food allergies. Our latest challenge has to do with wheat/gluten.

Because of his other allergies, my son's main source of food is Pediasure. He tasted Shredded Wheat and really liked it. He ate more of it than he does most other foods, and then he developed a rash on his face. This happened twice before I spoke to his allergist who said to go ahead and take him off wheat. He had skin and blood allergy testing done about 6 months ago that were both negative for wheat. Nonetheless, when I took him off wheat products, his diarrhea stopped within a week and he had normal diapers for the first time in 18 months. He even started eating more food instead of just bottles. He grabbed a handful of Cheerios the other day and had diarrhea a few hours later. He has only had one other diaper that was not normal since we went wheat free.

We see the allergist next week. He said he wants to do extensive testing. He was in the hospital last week for his sickle cell, and the nurses asked about celiac disease b/c of his wehat restrictions. I started researching it after that. I am concerned that if they test for it the results will not be accurate since he will have been gluten free for a month by then. Should I let him eat what he wants and see what happens? Should I just describe to the doctor what happened and see what he says? We don't have a GI appointment until the end of the summer.

This is all so complicated. My son also has the bloated belly, anemia, FTT, and occasional irritability. All these symptoms are common with sickle cell disease, but I see that they can also be connected with celiac disease. I am really hoping we do not have to continue avoiding wheat because he is allergic to egg, peanut, and all legumes so his diet is restricted. The recurrence of diarrhea with Cheerios makes me fear that we really do have to avoid wheat.

Sorry I rambled. I am confused and concerned. Any advice or insight would be greatly appreciated!

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cdford Contributor
cdford
Posted

You are in a tight spot. Reality is that the tests are not accurate if he has not been on gluten for a while. The other reality is that you know what it does to this child and have a hard time knowingly triggering it.

I would discuss it with the doctors before I did anything and let them know how clearly the dietary challenge showed a problem. Give them a call and discuss the situation with them. They may try and talk you into making him sick to verify that he is sick, but at least you will have all the info you need to make a good decision. Maybe you will have understanding docs and they will note in their files about the positive dietary challenge and let it go at that. My experience with gastro docs is that they get pretty ornery about diagnosing without a biopsy, though. An allergist or endocrinologist might be easier to work with. Ours certainly were.

JacobsMom Contributor
JacobsMom
Posted

I would talk to the doctor also before I did anything....You really need to take him to a Gastrologist...My son has a allergiest too and had been thru the skin test and when we found out he had Celiac I asked him why he didnt tell me and it is because it is not a skin allergy it has to do with his GI...I am so sorry your going thru so much...I know how much of a restriction it is do just have to avoid Wheat and you have to avoid so much more...I will pray they find out something to make things easier..And your poor little one...I would definatly avoid wheat if it seems to help.

Good Luck!!

  • 1 month later...
robbiesmom Rookie
robbiesmom
Posted

I am so sorry you have so many dietary restricyions-I have enough trouble with just the gluten! I think to gat an accurate blood test you will need to keep him on the wheat until after the test-mine came back negative and I am pretty sure it was because I was wheat/gluten free for 2 weeks before-I am feeling much better so I know I have some sort of issue with it-hang in there until after the test. After the results even if they are negative go gluten free since it has helped.

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