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Old 12-17-2009, 09:08 AM   #1
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My son and myself: possible Celiac

My 10 year old son has been experiencing stomach pain daily for months now. He doesn't have diarrhea or constipation, as far as he and I can tell. I finally decided to take him to the doctor after 2 months figuring that it's not just a tummy ache if he's had it this long. They checked manually for a hernia, asked him if he had any acidy symptoms (he doesn't). Then, they sent us to the lab and had blood drawn and a urine sample taken. This included food allergies. Those came back normal. Then, we had a CT scan of his abdomen, and that came back normal. Now, we have been referred to a pediatric GI. They can't get us in until February, so I've been doing some research.

I have Hashimotos Thyroiditis and, when reading about possible stomach issues, I came across Celiac disease. It is hereditary and people with Hashimotos have a greater chance of getting it. I have been having stomach cramps, bad bloating gas and diarrhea for a few years, but just figured I was eating too much or something. Could I have Celiac disease? Could my son have it because of me? Wouldn't the lab work have shown it, especially the allergy testing?

I have decided to cut out dairy first and see if that's what's wrong with him. If that doesn't change anything, I'm next going to cut out gluten. This seems so darned hard! He's on day 1 of the dairy and crying because he can't have the holiday cookies we made the other day.

So, my issue is this: Have I just made myself crazy over this? Is there no possible way he has Celiac? Thanks for any advice!

 
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Old 12-17-2009, 03:06 PM   #2
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Re: My son and myself: possible Celiac

Your right, having Hashimotos does put you at risk for celiacs. Having any autoimmune disease from what I understand puts you at risk for getting another one. I was diagnosed with Hashi's in 2005 but soon after diagnosis had the thyroid removed because I had cancer. I've had stomach aches for several years and I also thought maybe I was eating too much or the wrong things. I mentioned it to my doctors but they didn't think much of it but were always eager to say I had fibromyalgia and wanted me on meds which I never took because I thought something else was going on. I did research on what could be making me feel ill and asked my doctor to test me for celiacs. It came out positive, barely. It was confirmed with an intestinal biopsy which showed flattened villa. I've been gluten free for three months and I'm feeling better. I've decided to take out dairy because I was still getting tummy and bathroom problems and when I'm strict and don't cheat I feel alot better. It's entirely possible you and your son have celiacs. One thing that I've learned is that the blood tests are not always accurate. You can get false negatives. One of my doctors who was having horrible pain and bathroom problems, her blood test came out normal but she asked for an endoscopy and it came back positive for celiacs. I have a son with type 1 diabetes and one part of his celiac test came back positive but it's the one part of the test that really isn't always accurate so his dr. said he didn't have celiacs. I've done alot of research and I told my son that since he has diabetes and a mom with hashimotos, and celiac disease, he has a high rate of getting it. The problem with celiacs is that 50% of the people with it have no symptoms. There are 3 million americans walking around with this disease and they don't even realize it. And the health ramifications are horrible. Males are more likely to get the bad stuff that comes along with celiacs like cancer. It's just not worth it for my son to be eating gluten and he agreed and even though he doesn't have stomach problems he decided he would be gluten free.

There are two good books I would recommend getting. "Celiac Disease" by Dr. Peter Greene. He runs the celiac disease research center at columbia university and is world renown for his research on the disease. Another good book is by Shari Lieberman called "The Gluten Connection".

I have another son who is 12 and he has had intermittent stomach problems over the years and gets alot of headaches and muscle aches so I'm wondering about him. I'm reluctant to get the blood test because of the false negatives. I think I will do stool testing for him which is supposed to be a little more accurate.

Does your son have any auto immune diseases? That would also put him at a higher risk.

Beth

 
Old 12-18-2009, 06:58 AM   #3
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Re: My son and myself: possible Celiac

Beth, Thank you so much for your informative response. No, he doesn't have any other autoimmune diseases. He's had the stomach issues continually for 2 months. Before that, it was just every once in awhile. But, he used to get migraines at least every other week. And, yes, lots of muscle aches. I just chalked it up to growing pains. I will try to get one or both of the books you mentioned. I am learning a little more online. I just found out it's not allergies at all. I was just overwhelmed and confused by all the possibilities.

We have decided to start dairy free and see if he feels better. We'll do 2 weeks. Then, we'll do the rest of the time gluten free if the dairy didn't work. Dairy is just so much easier to take out of our diets. We'll just have to wait until Feb. 2nd to see the doctor and if I can eliminate certain possibilities ahead of time for him, it'll go smoother. I'll tell you what though. Reading about what to eliminate from our diets to go gluten free is VERY intimidating. I didn't realize how many non bread, non pasta things have gluten in them! Wow! The list is forever long. And, we try to stick to a pretty tight food budget. So, Whole Foods isn't a place I can usually afford. But, since we won't be eating out for quite awhile, that money can be moved over!Also, we are going to Disney World for 8 days during this time. So, if it's not dairy, I'll have to call the chefs at all the restaurants we're eating at and have him on gluten free. I hear they're pretty good about it.


How does your son that has Celiac handle the restrictions? I don't know how old he is. But, my 10 year old is already very upset at the possibility of not having his favorite foods. I've tried explaining that not being in pain should be reward enough, but he's just not seeing it yet.

 
Old 12-18-2009, 10:54 AM   #4
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Re: My son and myself: possible Celiac

My son who has diabetes is 15yrs old. It was a long decision making process but I did alot of reading and layed out the evidence for him about how he is at a very high risk and all the health hazards that go along with eating gluten if you have celiacs and that the only way we could absolutely confirm celiacs is with an endoscopy he pretty much made up the decision on his own. I was expecting alot of resistance but I think seeing me go through what I have over the last few years was pretty convincing evidence for going gluten free. He doesn't have the stomach problems but does get constipated despite eating salad and fruit and the only other thing that has changed with him that I read can be caused from celiacs is that he went from an A and B student and was energetic and kind to an F and D student that wouldn't get up in the morning and has developed a big personality change. Very aggitated and indifferent all the time. I've read that this can be a symptom of celiacs. It is frustrating not having positive laboratory proof and I've read that is whats hard for alot of people because the labs can be negative when their positive and people think that if they don't have the stomach problems then they don't have celiacs.

If you eliminate dairy I've read that to do an elimination test you need to keep the offending food out of the diet for at least one month. I've even read to do it for three months. If you decide to do a gluten elimination there are alot of gluten free products out there. Betty Crocker has a brownie, cookie and cake mix. You just have to be careful about the frosting. My store has a whole gluten free section with all kinds of baking mixes, cereal, crackers, and snacks. It is a little more expensive. I have a bread machine with a gluten free setting and it makes good bread. Much better than store bought. I think since I had been doing this diet for a few months before my son did it made the transition easier. One thing I did to help with my shopping was to make a copy of the pages in the celiac books of the lists of other names gluten goes by. Also, for future reference if you guys do the diet, buy gluten free lipstick or chapstick. Alot of products have vitamin E which can be derived from wheat so I would call the company if there is a certain product you like. In Dr. Greene's Celiac Disease book he says that in a womans lifetime she will ingest 4 pounds of lipstick so if you have celiacs you have to be careful with that. I ended up making my own lip balm which was pretty easy. That was probably a little overboard but I couldn't find any without vitamin e and the companies couldn't give me a clear answer. My doctor who has celiacs said that Burt's Bee's is gluten free. I better stop. I can go on and on about this celiac stuff. Good luck on your trip.

Beth

 
Old 12-19-2009, 10:34 AM   #5
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Re: My son and myself: possible Celiac

My apologies if this has already been mentioned and I missed it:

Do not start a gluten free diet until AFTER you/your son have been specifically tested for Celiac. No, routine allergy testing won't pick it up. There are specific blood tests that need to be done (and then, to absolutely confirm, an intestinal biopsy). If you go gluten-free before the testing is done, you are more likely to get a false negative result, i.e. the tests will say "not Celiac" when he really is.

 
Old 12-19-2009, 01:53 PM   #6
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Re: My son and myself: possible Celiac

Yes, she is right. You need to be eating gluten for the blood test. I went gluten free for three months before I was tested on the advice of my physical therapist to rule out foods that could have been contributing to my pain. I cut out gluten and noticed a big improvement. Decided to get a celiac panel and I asked the lab tech if I needed to be eating gluten for the test to work and she said no but luckily I did my own research and ate bread and pasta for a few days and it came out positive. Might have come out negative if I wasn't eating gluten.

Beth

 
Old 12-20-2009, 07:41 AM   #7
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Re: My son and myself: possible Celiac

Thank you both for that info. We have gone ahead and cut out dairy. We will fast before the doctors appt. so he can take the lactose breath test (or whatever it's called), but we won't cut out gluten. I'm very excited that we may have an answer in a few months! I want him to be out of pain.

 
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