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Frustrated With Symptoms In 14 Month Old

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My son is 14 months old and is currently on a gluten free diet, but has not been diagnosed yet. First I would like to share some background information. Sorry in advance for the long post.

He has always been a "high needs" baby. He has never slept much, wants to nurse constantly, is very clingy and fussy. When he was 4 months old he started having bowel movements every two weeks. The longest he went was 23 days. The doctors all said this was normal because he was exclusively breastfed. After starting solids at 6 months he still did not have regular bowel movements. The doctors said he just wasn't eating enough solids and he was fine. We tried everything to get him going regular. He had all different kinds of juice, fruits and vegetables, flax meal, probiotics. Nothing worked. At 8 months he went 10 days with no bm. He was extremely constipated. He was started on Miralax, 1 tsp every other day. We had multiple tests run. He came back with multiple food allergies and inconclusive IgA testing for celiac disease. One thing he tested positive for was yeast. I cut out bread with yeast, but not gluten. He did not grow at all between 8-12 months but after cutting out bread he gained a pound and grew an inch in 2 weeks. We saw a GI. He prescibed lactulose, but he couldn't keep it down (he is allergic to dairy so not sure if there is a connection). The GI said push more solids because he still isn't eating enough to produce any waste. We redid the IgA testing and found out he doesn't produce IgA. We did genetic testing. He has DQ2.5.

After the genetic testing I started him on a gluten free diet. By day 3 he starting having a bm everyday. They were mostly small amounts with more significant amounts every other day. This is the most he has done in months. He did this for 2 weeks. Gained a pound and 1.5 inches. He was eating more than I have ever seen him eat and he started nursing less frequently. His eczema also cleared up for the first time since he was a newborn. Then it all stopped. He went 7 days with no bm. He finally had one on Monday. During that week he wouldn't eat. He was wanting to nurse constantly again. I am just frustrated because I really thought the gluten free diet was working and then we are back to where we started. I really just want to figure out what is wrong with my baby and get him off of laxatives and back to normal. It is really hard with all of his food allergies plus being gluten free to even get him to eat anything. We eat fresh fruits, vegetables, meat, beans, and rice. I did bake some muffins with gluten free flour. Could this have been cross contamination? Is he possibly too sensitive to handle the flour right now? How long should I wait to determine if the gluten free diet is working? I really don't want to do the biopsy because he is so young and I don't feel as if he eats enough to even get accurate results. I am overwhelmed and frustrated and need advice.


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    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
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