Help 15 Mth Old W/ Symptoms Of Celiac Drs No Help

[kbalman]

Hello

I need help my 15 month old has been sick for over 9 months. He has alot of celiac (or some other food allergy) symptoms. Symptoms include bloated, gassy, constipated, failure to thrive (no weight or height growth for several months at a time), iron deficiency, fussiness, constant spitting up (worse on wheat items) rashes when younger about 1 every month, delayed developmentally.

Drs are really starting to annoy me. Just want to keep medicating him for relux and constipation (the symptoms not the true problem). They tried zegarid, zantac, prevacid. Miralax for consitpation. Something for cramping and bloating. Treated him antibiotic for parasite. Whipping cream in lactaid milk to help him gain weight now he is on pediasure (which is helping with weight gain). Iron supplement. Does not tolerate regular milk.

Tests they did which are inaccurate under age of 2 (finally got 2nd GI to agree with me on this). Blood work ttg iga <4 weak positive, ttg igg <6 weak positive, endomysial ttg igg negative. Also his immunoglobulin A Qn was low. They did biopsies because the numbers were weak positive. Stool test showed malabsorption of fats and sugars. (1st dr seemed concerned 2nd dr was not said levels were borderline) They only took two in duodenum and it was negative. Wish they would have taken more, which I know now after researching. They then totally ruled it out despite what I told them about symptoms and how he doesn't spit up when he doesnt eat wheat items.

I went to a dietican who could not help due to not having a diagnosis mostly went to her because we wanted to try gluten diet and what assistance (1st gastro denied helping me with diet).

Went for 2nd opinion to another GI today. Ordered allergy test and parasite test , getting done later this week. He also swore it was just acid reflux. Asked him about trying gluten diet and he also said to wait until he was at least 20 mths old when they could try blood work and possible biopsies again(which may still not show issue since he is still under ). Said putting him gluten diet would mess up results. Also did I mention my husband is a type 1 diabetic which makes my son very likely to have celiac. 2nd doc said if it was acid relux it should be better by 20 mths if he still has issues then they will continue to try to figure out what it is that is wrong with him. UMMMM we have been already putting off and waiting and waiting for things to get better for months and months. 2 pediatricans, 2 gis, and 1 dietician later no answers. And acid reflux meds obviously dont work since he is on his third one. They are happy b/c he is gaining weight and pooping so they think he is getting better. Only reason he is pooping and gaining is because they are making him with the pediasure, and miralax. Take him off of all the meds and special drinks and I assure you he will go back to not growing and not pooping. Treating symptoms really irritates me wish they would figure out what is wrong.

I guess depending what the other two tests say I think we are going to really just try the gluten diet to see how he does. What I need help on is where to find info on making sure he is getting proper nutrients, what to feed him, etc.

Any help or input would be appreciated. Thanks Kathy

[ShayFL]

A gluten-free diet can be VERY HEALTHY. Lean meats, fish, eggs, nuts & seeds (and their butters), all veggies and all fruits. Brown rice. Yogurt if he tolerates it. These foods are where REAL NUTRITION is.

Kids generally love sweet potatoes which are full of nutrition.

[MarsupialMama]

Take matters into your own hands. Parents have a better grasp on how their children relate on a day-to-day basis rather than doctors who only run tests and compile symptoms. Try the gluten free diet for a few months (I recommend 3). You will be able to see SOME kind of changes within that time, and you can judge for yourself if they are positive. I put my second daughter on gluten-free because she was losing weight pretty bad, but at the same time I put my first daughter on gluten free as well, just because it was easier for me to make meals. Even though she had no symptoms, she had a major change in the size of her stomach (used to be bloated, which we just thought was normal because she loves to eat). That alone tells me that she could be gluten-intolerant as well as my other daughter who has DRASTIC reactions.

Any doctor would say she is perfectly fine and growing great.

Go with your gut. If you think gluten is the issue, try it out. There are so many yummy things to eat without gluten! Good luck!

[taweavmo3]

It sounds like you have tried all of the testing you can try....the time from 0-3 years is a very crucial developmental period, and I wouldn't hesitate to try the diet. My dd did not get diagnosed until she was 3, after 2 years of decline and increasing symptoms. Every doctor I saw told me she was just small, but I knew something was wrong. She did test positive for Celiac at the age of 3, but at that time she was about 18 months behind developmentally. It's been 3 years since then, and although she is doing great, she still struggles in school and is still in speech therapy for receptive/expressive delay.

I put all of my kids on the diet eventually, even though only my dd has tested positive. My oldest son has Psoriasis, and since that is also an auto immune disorder, that was enough prompting for me to decide we all needed to be gluten free. We don't need any more auto immune diseases showing up one day! I just couldn't sit around and wait for my other kids to get sicker and sicker just for the sake of a test. When they are older, they can decide for themselves.

It's a really personal decision, but in these crucial early years, I would at least give the diet a chance. You have nothing to lose and everything to gain. This diet is very healthy, going gluten free just cuts out the processed junk that most kids live on these days. We eat meat, fish, chicken, potatoes, rice (brown for whole grain), tons of fruits and veggies, and homemade baked goods. Kids really appreciate a loaf of bread when they see all the work that goes into making it! If you need any help, this board will likely be more useful than any dietician. Good luck to you!

[mftnchn]

I agree with these posters.

Some children need an even stricter diet that limits carbs due to digestion problems and follow the SCD. Lots of autistic kids on that diet. You can read a lot about it if you want to on www.pecanbread.com

My point is that even a more restricted diet than gluten-free can be very nutritious and kids can thrive on it.

Too bad you haven't found a practitioner that is willing to support you in this, but in this case, I think you as the parent are sensing what you need to do. If you child responds and thrives, the doctors might believe you but many won't admit they might have been wrong.

[mommida]

At fifteen months all the testing that can be done (except the genetic test) has been done. The tests are unreliable especially for under 24 months. The genetic test may not be covered by insurance and there have been people diagnosed with Celiac even though their genetic test was negative.

If you start the gluten free diet you can not do further testing except the genetic test.

You may never get a formal diagnoses. (Which could be a blessing because some people have complained about higher insurance premiums or even denied coverage.)

Your child's care is in your hands. There is no prescription needed for a gluten free diet. If you do start a gluten free diet KEEP A FOOD JOURNAL you need to document the information to use it as a diagnostic tool. You should learn about the casein free diet too.

[MarsupialMama]

Something I agree on - keep a food log. While I am one of those people who would rather have their fingernails ripped off with pliers than keep a food log, I found that actually keeping a daily record of her food was very helpful for several reasons:

First, I could see what she actually taking in, making sure she was getting variety and not stuck in the same rut.

Helped me to keep meals interesting and healthy.

Second, one the right side of the paper I would jot down a few notes about her attitude, behavior, looks, bowel habits, etc. When things started going wonkyagain, I could pinpoint possible places that she was being "glutened."

Third, it helped me keep my sanity, by seeing in my own writing, notes about her improvements. I was amazed at how many things had actually changed, even though day by day I was thinking "You know, maybe this isn't it....". Was a real encouragement for the tough times to keep you on track.

Forth, I have an actual log of what is going on with her diet and body as proof for the doctors/authorities to be able to tell them "This is what we have done, and these are the results we have seen." MUCH better than a foggy memory when you are sitting in a doctors office with a baby. :-)

[kbalman]

Everyone thank you so much. I went to the store last night after 2 1/2 hrs I purchases items that were gluten free. Good news is my mother watches him during the day so I am going to prepare his meals and snacks for him every week and take over to her.

Question what is casein free? I will definitely try to keep the food log. That is actually how I pinpointed the gluten issue. We started logging what he was eating and always seemed worse and spit up more when he ingests wheat. Docs didn't seem to care about that though.

I am going to keep researching foods he can have and not have so next time I will hopefully not have to spend 2 1/2 hrs at the grocery store. I will continue to post here the help and support is great. I will let you know how he continues to do.

[home-based-mom]

Everyone thank you so much. I went to the store last night after 2 1/2 hrs I purchases items that were gluten free. Good news is my mother watches him during the day so I am going to prepare his meals and snacks for him every week and take over to her.

Question what is casein free? I will definitely try to keep the food log. That is actually how I pinpointed the gluten issue. We started logging what he was eating and always seemed worse and spit up more when he ingests wheat. Docs didn't seem to care about that though.

I am going to keep researching foods he can have and not have so next time I will hopefully not have to spend 2 1/2 hrs at the grocery store. I will continue to post here the help and support is great. I will let you know how he continues to do.

Casein is the protein in milk and has the potential to cause many allergic and intolerance problems some of which can be quite serious. To be casein free you need to be dairy free.

As far as shopping goes, it is difficult to find processed convenience foods that he (we ) can eat. Better to stick to fresh and frozen meats and produce that you prepare yourself. There are cereals at whole foods type stores that are gluten free. Trader Joe's markets cereals intended to compete with the Cheerios varieties. They are not labeled as gluten free (probably because of potential cc) but have no actual gluten ingredients.

I hope your next shopping trip is shorter. That's a long time to spend in a grocery store.

[betsyabailey]

Hey! It's such a pain to get our little ones diagnosed. I guess the real question is do you want a diagnosis or do you want him to get better? Chances are he won't test positive till after he's 6 not 2. My son's a classic celiac. We knew when I was breastfeeding. So we've been gluten free except for 2 weeks of his life 21 months old now. I won't say it's easy or cheap to feed gluten-free but it does become a habit. If you have a whole foods near you go there they'll help with finding things that your son will eat. Also there's great books out there just google celiac kids. If you're not near a whole foods or reasonably well stocked health food store glutenfreepantry.com has tons of kid friendly options. My son LOVES the glutino crackers (the first and only good crackers i've found) The bottom line that Dr Kelts (our ped GI) said is even our son who's totally a celiac will probably test negative. It's the tests.... and the best way he's found to test for celiac in kids is to do the gluten-free diet. It's pretty easy then to see if it works. Good luck. If you have any questions just ask.

Betsy

[kbalman]

Thank you everyon. This place is great. SO he has been gluten free since friday. Thank god he is not a picky eater (yet anyway). So far so good. I cannot wait to see how he is in a few months. He is on pediasure so he is finally gaining weight and growing in length.

[kbalman]

Well his allergy panel came back negative. I know that does not mean he does not have celiac since that is an intestinal disorder not an allergy. I was sure it would show he had a lactose intolerance. Anyway we are sticking to the diet, and will see how he is in a few months.

Does anyone know if the allergy panel is accurate on children 15 months old?