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Need Moral Support And Advice For My 4Yo
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Hi Everyone, I would love any advice from parents of young kids with celiac for the first few months. And I just need reassurance that I'm on the right track. The problem is I have a celiac specialist but my son hasn't seen one yet so I don't really have anyone to ask. His old GI, who did the testing and endoscopy doesn't believe he has celiac so I can't really ask her if he's on track. (Just for background, my son has had slow growth and weakened teeth for a few years, I thought he was tested but realized he wasn't tested for celiac, then this summer he started getting major diarrhea. He's actually had diarrhea almost daily since August. Also he has some poor nutrient levels and other signs of illness on blood work up. First couple of celiac blood tests came back negative but, because of diarrhea, GI went ahead with endoscopy/colonoscopy. I also talked her into doing another round of tests and she did full panel through Prometheus. He came back with DQ2 gene, which I have (as well as diagnosed celiac) and a strong positive DGP IGA. Biopsies were negative, but I'm having the pathologists at another hospital look at them.)

He's been off gluten for two weeks and still having diarrhea and bloating. I'm trying to be patient and also realize the gluten-free diet might not cure everything. I'm pretty sure lactose is the issue because I've tried to keep him off it and he seemed to do better this weekend. But today I let him have macaroni and cheese (gluten-free of course) and he blew up like a baloon and had pain and diarrhea.

So I've cleaned out my kitchen, trying not to eat out or get processed food, now I'm goiing to keep a food and symptom log for him and be strict about lactose. But please tell me I'm on the right track. I see a celiac specialist on the 28th of November. I hope she can confirm his diagnosis or at least confirm something besides indigestion is wrong here.

Also, is there anything wrong with giving a little lactaid to get him through Thanksgiving? I mean, whatever's on the menu, I get to drink wine! The kid should at least be able to enjoy some gluten-free cookies and dessert with gluten-free ice cream.

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From the reading I have been doing lactose intolerance can go hand in hand with celiacs. All of my family have a problem with dairy. We drink coconut milk instead, and there is coconut icecream that is delicious! So Delicious is one and my favorite is Larry and Lunas icecream - it tastes like the "real" thing.

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does he play with playdough? or anything that has gluten in it?

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He might be able to get some lactose back, but first he's going to have to go off of it for a while, because the same part of the intestine lining that got damaged by gluten, is the part that digests lactose. If he's really sensitive to all dairy now, there are lots of non- dairy alternatives, as mentioned above. And there is no reason I can think of that gluten-free cookies cannot also be made dairy free cookies, with all the milk alternatives and butter alternatives for the "fat." (you can even make cookies with olive oil, besides palm shortening or coconut oil) He may be able to eventually handle things like butter, cream, yogurt, hard cheeses in reduced quantities, if he does not also have a casein (milk protein) problem.

Of course you are on the right track, don't let any doctor tell you that a major gut malfunction is "normal" if it responds to the elimination of a food protein category, with that family history, symptoms, and the blood test result.

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:) You are a GREAT mom and are on the right track! It is difficult at first and you will definitely find your rhythm. We talk all the time about how awesome it is that ice cream is gluten free (we often eat the coconut milk ones and have made three batches of homemade ice cream for Thanksgiving--lactose free, one dairy free).

Yes, find some non-provocative "treats" for him for Thanksgiving...and keep telling him/yourself that having Celiac helps you be really healthy--that you're taking care of your bodies so you can really enjoy life!

BTW, our twins and I were all diagnosed this calendar year. Last Thanksgiving one of our girls ate tons of pasta and vomited a half dozen times after our feast. I promised her I wouldn't serve pasta of ANY kind this year. She was so thankful! Sometimes it's about feeling "not bad" and sometimes it's all about feeling good!

Thinking of you! Happy Thanksgiving!

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    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
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