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Seriously...


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18 replies to this topic

#16 Gemini

 
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Posted 12 February 2009 - 09:24 AM

Hi again,

I'm relieved to report that the colonoscopy and endoscopy showed no abnormalities that the doc could see. He did take another duodenal biopsy. He definitely thinks I'm sneaking gluten. I'm happy that I don't have anything serious going on, but unhappy because the pain and all the D definitely wasn't in my head. And I already tried the elimination diet. When I was on rice, carrots, and chicken I still had D and pain. Same with when I replaced rice with sweet potatoes.

So tomorrow I'm making the calls on all of my lip balms to verify that they're gluten free (most of them have vit E), then I'm tossing any remaining items that may be suspicious unless the company confirms gluten-free status. I've gone off all of my supplements for over a week now and it hasn't helped (they all have clean ingredients and are marked free of gluten). So now I'm going to call the pharmecutical companies again to check the meds I've been taking. I've been working so hard to be gluten free, I just can't imagine that I brought this on myself.

I also bought two books on Amazon regarding celiac. Still can't believe that my local B&N didn't have anything on it but cookbooks. :blink:

Anyways, thanks for the support - any new ideas would definitely be appreciated! It's been a rough month.

Jen


Jen....I seriously think you should see an allergist or naturopath to be tested for other food allergies/intolerances. I think you are probably not getting any gluten because you are taking it seriously and being very careful. People really get hung up on the idea they are being glutened and then develop fears about eating.....as you mentioned yourself. It may take longer for some to heal but if you are not ingesting gluten, the pains should not be there. Your tTg might take awhile to come down but pain and discomfort should not be there, at this point. It really sounds like other foods are also giving you a problem. This is usually the point where people jump ship and go to see alternative docs because the medical profession will, indeed, think you are cheating. They only concentrate on one thing and that isn't going to help you.

The other issue with the still elevated tTg is other autoimmune problems can cause this. Hashimoto's thyroid, liver disease are but a few. I am not saying you have these additional problems but they are strongly associated with celiac disease and will elevate your tTg.

I hope you feel better soon....hang in there because it can test your patience.
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#17 JRock

 
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Posted 13 February 2009 - 09:49 PM

Good evening all,

Another night in pain - I don't know what I'm doing wrong. My hubby thinks that sleeping with the cats on my bed may be a problem, and petting the dog. I'm very good about washing my hands. Another gluten-free day/week/month and I'm still in pain. I think Gemini is right - it must be something else. But how do you get a Dr. to test for something else? My doc seems quite set on the idea of me cheating - I must be a masochist! I stopped drinking for a week - no good (I have a Bard's Tale Beer here and there), did the whole simple diet, didn't help. I don't know what to do.

I feel like I've hit a brick wall and I'm begging for help but this doc that the base referred me to seems to think it all goes back to me being glutened. I'm going to look into gluten-free food for the animals - no idea how two cats at the foot of my bed would gluten me, but I suppose that's another possibility to eliminate. This is so frustrating. I'm keeping my chin up (my mom insists) and I've got a gluten-free list from Burt's Bees (all of my skin/hair care is wheat free, there are a few products that I'm learning the Vit-E sources from - waiting on responses and not using until I hear from them).

Tes - I don't use chicken broth - I use boullion that has to be refrigerated - but I rarely use it at all - no gluten ingredients! And my household is gluten free - I threw out any contaminated appliances months ago. This disease is costly :P

I'm in too much pain right now so I have to go, but thank you for the support - I really need it right now with my hubby gone.

Jen
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#18 ravenwoodglass

 
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Posted 14 February 2009 - 03:42 AM

Good evening all,

Another night in pain - I don't know what I'm doing wrong. My hubby thinks that sleeping with the cats on my bed may be a problem, and petting the dog.


Jen do you feed them food with gluten in it? I had issues for months with mystery glutenings until I switched mine to a gluten free food. Check the pet food and litters.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#19 oceangirl

 
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Posted 14 February 2009 - 01:57 PM

Yes, check the pet food.

I have many animals and recently introduced a new puppy who is spreading his food all over the house and kissing everyone and I've been suffering from some mysterious glutenings. The dog food I use presently is gluten-lite, I think. But I think I might be getting it from somewhere in the dog food... (I, too, have cats all over our bed. They are gluten-free, too.)


It's just something else to eliminate. Please feel better soon- I hope you get to the bottom of this!

lisa
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