Help With Diagnosis

[jmeds77]

Hello. I'm very new to this board but not new to Celiac Disease and going gluten-free.

I'm writing because I'm having a hard time finding the next step or needing some encouragement with my 3yo and 18m old children.

I'll start with my dad and my two brothers have Celiac Disease. My dad was diagnosed 13 years ago and my brothers about 8 years ago. We are definately used to cooking and eating gluten-free. Naturally, I assumed Celiac was a very possible cause for my children's issues.

Miles and Lucy (my kiddos - one on the way!) have both had chronic diarrhea their whole little lives. My oldest, Miles, has gone on forever just because he's older, but his younger sister is exactly the same. We range from 3-5 diarrheas per day. Often exploding out the diaper (I think every onsie we have is stained) and a variety of types from liquid to mush to guacamole-ish, sticky, oiley, etc. Very nasty. Different colors and very foul nose-burning smell. My son also complains of "yucky burps" which I believe to be acid reflux.

My ped did some blood work on my oldest in November and everything came back normal for celiac. The IgA was 2 and the IgG was 3. They both have slightly low iron.

We did a trial gluten-free (no cheating, etc.) for about three weeks and saw "some" improvement and then stopped giving them Milk and Cheese only in addition to gluten-free and saw almost total improvement in their poos. Then we took them off to see the change and hopefully get more testing done.

Since being off (they were only gluten-free for a total of 6 weeks and cutting the big lactose culprits for 3 weeks) we're right back to the nasties.

Miles recently went to the allergist and got a skin prick test done for all the "big ones" and nothing showed.

The allergist told us to go back gluten-free for at least 4 months and then add lacto free if we don't see the results we want. We have an appointment with a Pediatric GI in April to talk if the gluten-free diet isn't doing the "trick".

We've been gluten-free again for two weeks now and I'm not seeing improvement in either kiddo. How long does it take to notice. I'm getting discouraged. I feel like we'll be dealing with diarrhea forever!!!! Am I missing some magic test or something. I'm confident in my gluten-free cooking and ingredient knowledge (half my family has eaten this way for so long) so I know they're eating properly.

Please help if you can.

Jaime

[ang1e0251]

I'd say your dr is subjecting your kids & you to months of bad stools. It's seems clear from your story that it is the combination of gluten and dairy free that did the trick. Many of us here are dairy intolerant, I am one. When the intestine has healed, many can add dairy back in. Others still cannot have it. In any case, I would say there is a large percentage of adults and children who cannot tolerate dairy. It's very common with celiac disease.

I've changed those diapers and I feel for you. Personally I would do what I knew was in the best interest of my child regardless of what the dr reccomended. But that's a personal descision that you as a parent must decide for yourself. A diary on the symptoms they have and the diet they consume can be helpful for you and your dr with dxing and choosing the children's care.

Whatever your desicion, we support you on the forum and feel free to keep asking any question that comes along.

[debmom]

We saw a similar situation with my daughter. She took over 6 weeks for the gluten problems to subside and she never tested positive for any allergies except to cats on the skin prick tests. But we took her to a different allergist who tests one thing at a time with a small injection under the skin and within 2 minutes she was exhibiting the same reactions as she did with gluten. That also revealed dairy, soy, egg, and mold allergies all of which were born out by our elimination diet and change in environment. I would say that your children's issues appear to be gluten and dairy. I'd avoid both for three months at least and try adding the dairy in only after several months.

Good luck!

[jmjsmomma]

Hi Jaime,

I am new to the Celiac world myself...my 5 yo was just diagnosed this month, my 3 yo is negative and my 2 yo is questionable and requiring the test for the gene. Anyway, I am sorry that you are struggling for answers and hope that you get this figured out soon! Welcome.