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Long Time Celiac; Symptoms Resurfacing
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My 15 year old daughter was diagnosed via biopsy w/ Celiac when she was 9. She has been perfectly compliant with the diet because for the first time in her life she was physically thriving. I am confident, 100%, no shadow of a doubt that she continues to be compliant with the diet. She only has accidental glutenings maybe 1-3 times per year. We keep a gluten free house. She is an extremely sensitive Celiac (intolerant to Oats and everything).

 

SHORT VERSION:

Every time she eats, she feels glutening symptoms about 20 minutes later and always has very loose stools when she goes to the bathroom. A visit to her GI revealed low on vitamin D and B12 and possible signs of active Celiac in an endoscopy. Another visit to an allergist revealed no actual add'l food allergies. GI doc seems "stumped" and had no add'l suggestions.

 

LONGER VERSION:

 

That said...

 

...About 5 months ago, her Celiac symptoms began resurfacing with no obvious signs of glutening. Her acne flared up (ok, maybe normal for a teen, but otherwise had great skin), diarrhea and loose stools came back, started losing weight because everything she ate would make her feel crummy.

 

We did a loose food elimination diet and removed meat and dairy and made an appointment with her GI. He scheduled the full range of blood tests and another endoscopy to check things out. The blood tests showed deficiency in B12 and D vitamins and the endoscopy showed mild signs of Celiac (meaning gluten exposure). I may have been able to explain the gluten exposure because we *thought* she had been glutened some time in early September (this was early October when we saw the GI), but now it is February and I am completely sure she has had zero gluten exposure since then.

 

The doctor gave us no real course of action other than to see an allergist about additional food allergies. We did, and she came up negative. Nada. Zilch.

 

The problems persisted and we did a more thorough elimination diet. Keeping meat and dairy removed, she also noticed symptoms were worse after potatoes (but no other nightshades), corn (sorta, she says), peas, some nuts (peanut butter bad, almonds good).... But we have never reached a point where she feels "right" again.

 

I have made an appointment with a new family doctor (we needed a new doc and she hasn't had a well check in some time) and am hoping for kind of an overhaul/holistic approach, but hoping someone here may have had similar experiences.

 

I hate to worry about refractory celiac :wacko: or IBD/Crohns :huh: , but egaads. The poor girl just can't catch a break.


Thanks in advance for letting me vent and for any insight.

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Just because she showed no allergies doesn't mean she doesn't have additional intolerances. From what I have read, soy can cause the same damage to villi as gluten and I believe dairy is the other one mentioned. (I have been trying to find out if corn does the same thing but can't find any info.)

 

You have eliminated gluten and dairy - how about soy?

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Oh yeah, the other thing I would check into is non-food items like her make-up and shampoo. Companies change their formulas all the time depending on the price of ingredients. It could be something as simple as a new ingredient in her favorite lipstick. Or maybe she is dating now that she is 15 and her boyfriend is kissing her after eating gluten?

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Just because she showed no allergies doesn't mean she doesn't have additional intolerances. From what I have read, soy can cause the same damage to villi as gluten and I believe dairy is the other one mentioned. (I have been trying to find out if corn does the same thing but can't find any info.)

 

You have eliminated gluten and dairy - how about soy?

Yes. I forgot to mention elimination of soy, too. So, to sum up for those keeping score at home, we have eliminated:

  • Meat
  • Dairy
  • Soy
  • Potato
  • Corn
  • Peas
  • Peanuts
  • Eggs (she will have occasional egg whites)

 

She seldom eats any nuts, other than an occasional pistacchio or almond.

 

I get that other food intolerances could be present, which is why I was so cool with trying an elimination diet. But I would view it as highly unsuccessful because her symptoms are not improving and her quality of life is low. We were very thorough and had her really just down to rice and broccoli and black beans and started reintroducing foods one at a time over a period of about 8-10 weeks.

 

She has been off of all of the above-mentioned foods since 1/1/13.

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Oh yeah, the other thing I would check into is non-food items like her make-up and shampoo. Companies change their formulas all the time depending on the price of ingredients. It could be something as simple as a new ingredient in her favorite lipstick. Or maybe she is dating now that she is 15 and her boyfriend is kissing her after eating gluten?

That's the first thing. And no kissing either. We even had the heart to heart about "are you *really* kissing someone" just to make sure she knew the severity.

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We really are true gluten vigilantes. She is really great about it, too. She just gets way too sick. Many nights of tears thinking she did something wrong...

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Eggs, too. We removed eggs, although she will have occasional egg whites. She says it doesn't make a difference. She's just not a fan of eggs. We started with the top 8 allergens and started working our way through all of the trouble categories.

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OK, I'm thinking. She has basically been sick since her last glutening? Maybe there was enough damage done then to, as my nutritionist put it, send her immune system into hyperdrive. I had had celiac for years, and when I first started gluten-free I felt great for a few weeks. Then some gluten-free cornbread sent me into a tailspin. After that it seemed like EVERYTHING made me sick. The nutritionist said I was reacting to the pesticide and chemical fertilizer residues on my food. She told me to go strictly organic for a while. It worked. Maybe worth a try?

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I vote for SIBO. Research is showing it's very common among celiacs, and has almost identical GI symptoms. I'm being treated for it as we speak.

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Here is a really good link I found about SIBO.

http://www.siboinfo.com/diet.html

 

We've had similar issues in our home and our son reacted after eating a raw corn cob the other day.  I'm wondering if it's because it wasn't organic because he doesn't react to corn.  He's stick thin and getting thinner, despite eating a lot of food.  His issues are grains.  I think he needs to cut them all to be well.

 

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There is another possibilility that I don't think anyone mentioned.  Some celiacs are sensitive to lower levels of gluten than others.  My son and I are sensitive to very low levels.  Some also increase in sensitivity as time goes on.  That happened to my son and I.  We are on a diet now of mainly home grown food.  I am not suggesting that you do that though.  What you can do is go to a diet of produce and unprocessed meats and see if symptoms clear up.  Then you can add foods one per week while keeping track of symptoms.  It can take about a week for symptoms to show up.  Then it is easier to find any other food intolerances or sources of trace gluten contamination.  I hope that you can get it figured out.

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My husband has a coworker whose brother has celiac- was diagnosed about a yer ago and felt great after starting the diet, but symptoms like you describe began creeping back- his GI diagnosed him with bacterial overgrowth. He is 110% after a few months of treatment.

Life changing for him.

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