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Do I Have Celiac?


the.mayor

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the.mayor Newbie

Please forgive me if I am in the wrong place, as I am a newbie, to the very helpful forum.

Short history and testing:

Date 1955-1964

Age 12-21 chronic ulcerative colitis, blood transfusions, muscelose (sp) predinosone

Date 1964

Total colectomy, ileostomy

Date 1965

Rectal excision

Date 1965 - 1991

GOOD HEALTH

Date 1991-present

Cardiac Artery Disease numerous balloon angioplasties and stents

1993

Diabets type 2 - present undercontrol with meds

1994

Gall Bladder removal

1995 to present

Atypical TriGeminal Neuralgia now under control, treated with opiod large doses

Presently

CAT scan indicated SBO due to adhesions and twisted small bowel

Emergency exploratory surgery around Feb 2 surgery removed adhesions, a hernia

CAT scan indicates some inflamation of illium

Blood work indicates gluten/celiac?

Symptoms: now include the typical gluten sympton. Even though I am on heavy doses of

oxcontin, does this have gluten in it?

Intestinal bloating, severe abdominal cramps, can't sleep lying down very often.

bad nausea, some vomiting.

Does the above indicate gluten? The PAIN is brutal and the nausea keeps me from eating.

Can gluten cause these awfull cramp and body wasting wasting away.

I am to see my diabetes MD today. He has said to see a nutritionist.

Is there an difference between a nutritionist and nutrationalist? Which is better?

What is best for cramping?

What foods should I start with?

Will be seeing an allergist on Tuesday any specific tests he should administer?

Any advice you can give, I will be forever grateful. I am barely hanging on.

John


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nettiebeads Apprentice

Whoa! I sure hope you have really competenct drs. The only thing I can add is have you ever done the totally gluten free diet? Some sufferers here have reported success on a carb specific diet. I don't know the details of that one, but if you were to type diet in the search, you might find it. When I would get glutened, I found the best source of comfort was a heating pad. Basic, but it helps. Chamomile tea and ginger (like in ginger ale or let the soda go flat if you don't want the bubbles) and also peppermint are good for upset stomachs. I'm so sorry to hear of your health problems; I pray your doctors can start you on the road to good health.

Annette

jerseyangel Proficient

John, I'm so sorry for all you've had to go through. You say that your blood tests indicate Celiac--are you on the gluten-free diet yet? You should be completely gluten-free, including food, personal care products, meds, etc. What are you eating now? That would be helpful to know. When I was at my sickest, I ate Cream of Rice hot cereal. Bananas are also good for a queasy stomach. It can be hard to even eat the right things when you are nauseous, but sometimes a bit of bland food actually helps. Gluten can cause the symptoms you are having--hopefully the nutritionist is well versed on Celiac and can get you on the right dietary track. I'm glad you found us --the folks here are very kind and helpful. Please keep in touch--good luck with your appts.

the.mayor Newbie
Whoa! I sure hope you have really competenct drs. The only thing I can add is have you ever done the totally gluten free diet? Some sufferers here have reported success on a carb specific diet. I don't know the details of that one, but if you were to type diet in the search, you might find it. When I would get glutened, I found the best source of comfort was a heating pad. Basic, but it helps. Chamomile tea and ginger (like in ginger ale or let the soda go flat if you don't want the bubbles) and also peppermint are good for upset stomachs. I'm so sorry to hear of your health problems; I pray your doctors can start you on the road to good health.

Annette

How long did it take to get things under control?

Does lactose intolerance go hand in hand with celiac?

Thanks for the tips, especially the tea and ginger ale. I do have some ginger tea, which has not helped very much. I take it coffee is a no no, even instant?

John

John, I'm so sorry for all you've had to go through. You say that your blood tests indicate Celiac--are you on the gluten-free diet yet? You should be completely gluten-free, including food, personal care products, meds, etc. What are you eating now? That would be helpful to know. When I was at my sickest, I ate Cream of Rice hot cereal. Bananas are also good for a queasy stomach. It can be hard to even eat the right things when you are nauseous, but sometimes a bit of bland food actually helps. Gluten can cause the symptoms you are having--hopefully the nutritionist is well versed on Celiac and can get you on the right dietary track. I'm glad you found us --the folks here are very kind and helpful. Please keep in touch--good luck with your appts.

I am not eating very much, losing about a pound every 2 days. I am pretty underweight right now, 6 foot 3 inches, weight is 159.

I can eat biled rice, very small portions. I have tried some banana smoothies.

Not ware of personal care products being a problem. I am using Dial Soap, Head and S Shampoo, gel shaving cream or electric razor, Aqua Fresh toothpaste.

Thanks so much for sharing ith me.

John

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    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
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      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
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