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Introducing Myself
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3 posts in this topic

Can someone please tell me how I can post an intro of myself in a specific forum category?

I find this format confusing....

Thanks!

Karen

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Hi, I'm Karen. I am 41 yrs old and have had celiac disease for more years than I can remember (since my teens at least). I originally was diagnosed with celiac at age 23 and after 1 year on the gluten free diet with no results, the diagnosis was changed to Crohn's. Finally, 1 1/2 years ago, the blood test confirmed indeed it was Celiac.

I have been on the gluten-free diet since the second diagnosis, but still have not seen any improvement. I basically have had diarrhea permanently for over a decade. I also have hypo-thyroid disease, which is another autoimmune disease affiliated with Celiac.

I came across this board while searching for support. I am currently off work for a two week rest as I had another flare up with excruciating pain. Today is the first day that is seems to be subsiding. Have been eating only rice bread toast for weeks now.

This time though, it also came with the worst case of gas and belching I have ever had. It was absolutely constant - my throat, esophagas, ribs, everything was sore. Has anyone else experienced this? Also, there was a pain in my back on both sides flank area....

I am so worried that there has been so much damage gone unchecked for so long that I will never get better.....

It doesn't help that I work full time, have four children (including 3 yr old twin boys), which doesn't leave much rest time.....

Well, that's me in a nutshell. Hope to gain some valuable info from you guys!!

Karen

;)

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Welcome to the board. I'm sorry to hear about your troubles.

As for not finding any relief after 18 months on the diet, my first question would be to ask if you are 100% positive that you have eliminated ALL possible sources of cross contamination and gluten exposure (be it packaged products, stamps/envelops/play-dough, cosmetics/soap/shampoo, a not-entirely-gluten-free kitchen, medications, or anything else). My second question would be to ask if you have followed up on whether or not you have any other food intolerances or allergies which could be contributing to your symptoms.

I hope you're feeling better soon!

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  • Forum Statistics

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    • Positive Biopsy, Negative Blood Tests
      BTW, all first degree relatives of celiacs are supposed to be tested for celiac every 2 years in the absence of symptoms -- immediately if symptoms present. Your kids, your parents & all siblings should be tested. And that goes for your brothers kids too.
    • Positive Biopsy, Negative Blood Tests
      I agree completely with cyclinglady! Do you even know that there is such a thing called silent celiac? No symptoms at all but the villi are damaged.  I see you joined in 2009. Why? Is that when your brother was diagnosed? IMHO you need to do a lot of research & find out just exactly what you're risking. 
    • Positive Biopsy, Negative Blood Tests
      What?  Be sure that next endoscopy tests you for lymphoma (cancer) as well!   Seriously.  You need to do some research as your knowledge of celiac disease is lacking.  Did you fail the entire celiac panel?  Or did your doctor/insurance save cash and just order the very good (but does not catch all celiacs) TTG IgA?  You have a family history, a positive biopsy, what more do you need?  You do realize that this is not about just giving up gluten, don't you?  We just had a member join this year who was told years ago that her tests were "inconclusive" and that she now has suffered with lymphoma (cancer)? Ugh!   Endoscopy in 10 years?  Who would even wait 10 years?  This isn't colon cancer and polyps!   Are you talking about a colonoscopy?  Are you even sure you had an endoscopy?   Be sure you have your bones checked too.....and forget the breath.  You might not have any teeth and implants will be out since your bones will be compromised. Sorry, if I come on strong, but when I was diagnosed I had no tummy issues.  A few months later, my bones began breaking.  I was undiagnosed for a long time because of mis-informed doctors.  At least it was not stupidity on my part.   So, I urge you to research this disease more!  Hopefully you'll ward on another autoimmune disorder by remaining gluten free.  Find what celiac blood tests were actually taken!  Even if you do not think you have celiac disease, something has caused villi damage -- like a parasite, milk, or something......even more sinister! Good luck!  
    • Really, Really Foul Breath Post-glutening?
      In addition to eating gluten-free, I attribute the following to knocking out my bad breath once and for all: 1. SmartMouth Activated Mouthwash (this is what really did it for me!) 2. Flonase Nasal Spray 3. Dr. Tung's Tongue Scraper 4. The obviously brushing and flossing twice daily (goes without saying).    
    • Positive Biopsy, Negative Blood Tests
      I went in for an endoscopy to find out if something from my stomach/intestine was causing my bad breath.  A biopsy during that procedure revealed that I had Celiac.  I thought it was strange since I ate pizza, pasta, and other bread/gluten items almost every day without issue, so I decided to confirm the biopsy result with a blood test. I took the blood test twice (once on a high- and once on a low-gluten diet) and it came back negative both times.  I just assumed someone at the earlier biopsy lab must have messed up my analysis or accidently mistaken someone else's biopsy for mine, but after reading this thread it seems like my initial biopsy might have been correct all along. My doctor suggested doing another endoscopy, but I didn't want to foot the bill for that.  Also, my older brother has Celiac which was confirmed by both a biopsy and blood test. Eating less gluten did seem to help a little with my bad breath, but SmartMouth Activated Mouthwash along with Flonase nasal spray and a Dr. Tung's tongue scrapper really did the trick to solve the bad breath issue. I'm just assuming I have Celiac and eating "gluten conscious" until my next endoscopy in about 10 years. If that biopsy comes back positive again, then I'll be strictly gluten-free.  I'm just glad I don't have many symptoms.      
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