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I Moved From Silent Disease To Not Silent!


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6 replies to this topic

#1 Chopper

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Posted 26 January 2012 - 01:50 PM

In August 2010 I was finally diagnosed with a failing gallbladder after 1 1/2 years, and was also diagnosed with celiac during the testing series. I never thought I had symptoms except my stomach always felt full. Now, nearly 1 1/2 years later, when I have gluten, starting with the following morning, I have GI troubles for about 1-2 weeks. Anyone else experience this and have any theories why this happens?
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#2 Diane-in-FL

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Posted 26 January 2012 - 03:50 PM

In August 2010 I was finally diagnosed with a failing gallbladder after 1 1/2 years, and was also diagnosed with celiac during the testing series. I never thought I had symptoms except my stomach always felt full. Now, nearly 1 1/2 years later, when I have gluten, starting with the following morning, I have GI troubles for about 1-2 weeks. Anyone else experience this and have any theories why this happens?


It happens because you are still having gluten. You have to totally eliminate it. Even if you are only eating it once in a while you are still damaging your intestines. :(
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Gluten Free since 2010

#3 Marilyn R

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Posted 26 January 2012 - 07:00 PM

I went symptom free for many years, it's only in retrospect when I've read articles and books about celiac disease that I go "Wow, that explains that! And that!)

Surgeons chopped out my parathyroid glands and I didn't get better. I got even sicker.

My thoughts (and they're just my thoughts) is that once the disease went full blown (could have been borderline celiac disease for years, similar to borderline Diabetes), our fighter autoimmune cells were happy with randomly attacking our various organs and neurological system, then gets "caught" be attacking one repetatively.

We cut out gluten, they get hyper! We've removed their warrior and they're on the prowl. We were feeding them filet mignon and now they get a wee crumble of ground beef and they're in a frenzy.

At lunch, I had a frozen microwave dinner today that was labeled gluten-free that cost $6.50. It had no ingredients listed that I have problems with. Less than an hour later, I had uncontrollable D. I think this is going to be a minimal "event", I had two doses of Pepto Bismal today and I was able to attend a class tonight that was a half hour's drive away.

If it had been a serious glutening, I would not have been able to finish the day at work, drive to the class (wouldn't have felt safe driving), would miss work tommorrow and would have pretty much confined to the home for three or four days.

I broke a rule of not trying new foods until Friday (so that I have the weekend to recover if they don't work).

Hope that helps, Chopper.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#4 Chopper

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Posted 27 January 2012 - 07:10 AM

Diane, only once did I intentionally eat a small pretzel to see what would happen and that was after my biopsy came back that my villi were healed. I wanted to know what to expect when I was accidentally glutened. My sister in law accidentally glutened me 2 weeks ago and I'm still feeling the effects.

Marilyn, thank you for the illustration, it makes sense. When they did my enteroscopy about 1 1/2 months ago, he could see widespread gastropathy in the small intestine and stomach. He said that was evidence that there had been inflammation and it was healing. He "thought" he saw active flattened villi, but in essence, it was evidence of where there once had been inflammation in the stomach and flattened villi in the small intestine, but it's now healed.

It confused me why it started as a relatively silent disease, now I get terrible cramping and diarrhea when I accidentally get glutened.

Thanks,
Chopper
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#5 Marilyn R

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Posted 27 January 2012 - 07:43 PM

I hope you're feeling better, Chopper. It gets better.

If you ever want some ideas about safe foods to take to your brother's house, just ask. For instance, you can get a Wendy's chili and baked potato. I don't personally care for their sour cream or margarine, (but I could be neurotic, just so many additives), I can have a great meal with a baked potato, hot chili, and some real sour cream and/or real shredded cheese from a grocery store without getting sick from SIL's dinner.

Even if she can intellectually understand celiac disease, her cooking equipment and prep zones are probably contaminated. It can be awkward at first when you bring your own food, but my family has been cool about it. I probably felt worse than they did when I brought my own food the first tim. So just a suggestion, take your own food. It's not about the food, it's about getting together. :)

In retrospect, they're probably glad that I bring my own food.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#6 October3

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Posted 27 January 2012 - 08:59 PM

I'm a bit new to the celiac-specific thing but I've been dealing with food intolerances for years and it seems to be pretty common that once you eliminate a food your reaction to it gets worse than it ever used to be. Its as if you body is finally letting down its guard and saying "Wow, I didn't realize I could feel this good" and then when you have the offending food again your body figures it has to REALLY object now, to make sure you don't do that again. It seems to be part of the healing process. With other foods, if things go well, the reaction will gradually lessen as you heal until you might be able to to re-introduce that food again. From what I'm learning gluten is different from most foods in that respect though.
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#7 Chopper

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Posted 31 January 2012 - 02:15 PM

I'm a bit new to the celiac-specific thing but I've been dealing with food intolerances for years and it seems to be pretty common that once you eliminate a food your reaction to it gets worse than it ever used to be. Its as if you body is finally letting down its guard and saying "Wow, I didn't realize I could feel this good" and then when you have the offending food again your body figures it has to REALLY object now, to make sure you don't do that again.


Thanks for your reply. What you said makes sense. I've done so much reading online and I can't believe this is one thing that I haven't read about. I think it should be discussed more because the doctor and I were wondering if I had refractory celiac. I now have the peace of mind that my villi have healed and the GI trouble I'm having is probably from some accidental cross contamination. No one prepared me for this possibility.
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