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Diagnostic Testing History - Do You Think Its Celiac?


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#1 HowdySunshine

 
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Posted 16 December 2012 - 10:22 AM

I have been so impressed with the people on this forum. Most of your insight and knowledge well exceeds that of any doctor I have encountered.

So I wanted to ask for your casual opinion on if I might have celiac?

I think I **might** have it, but frustratingly can't get an official diagnosis.

I'm trying to put the pieces of the medical symptom puzzle together here by looking back at my medical records.

I have always been a normal weight male. Family history of IBS & high blood pressure.

Here's my relevant medical history and my notes on why I think it **might** be undiagnosed life-long Celiac. These are simply my interpretations and my theory:


*** childhood - I was unusually short in stature and below the growth curve in height through age 17. Looking back this is might have been due to the malabsorption from Celiac.

*** Age 23 - Out-of-range Low HDL, despite poor diet. Diet at was high in fat, lots of fast food. Despite high fat diet which should lead to higher cholesterol counts on all cholesterol types, the HDL was low. Likely because of malabsorption.

*** Age 23 - Treatment of loose stools begins with drugs such as Levsin, Lomotil, cholestyramine, Bentyl (this goes on for about 2 years) - no notable reduction in the symptoms. No success.

*** Age 23 Out-of-range high C-reative protein in-conjunction with out-of-range high WBC and Absolute Neutrophils (likely because of a cold at the time of blood test). But perhaps the C-reactive protein is showing inflammation in the tissues of the small colon (?).

*** Age 24 - Blood test shows normal, except high triglycerides

*** Age 24 - Out-of-range gliadin AB IGG moderate positive. Perhaps this reading is because Celiac has caused inflammation in the tissues of the small colon.

*** Age 24 - Colonoscopy w/ biopsy & Endoscopy/Esophagogastroduodenoscopy w/ biopsy - all biopsy pathologies are normal, negative for celiac. FRUSTRATING!

*** Age 26 - Treatment with Lotronex & Immodium is tried and is effective.

*** Age 26 - As treatment proceeds, absoption increases and cholesterol levels rise - higher triglycerides, LDL.

*** Age 31 - Blood test shows trace protein in urine. Despite having suppressed the symptoms successfully with Lotronex and Immodium, the undiagnosed underlying celiac has started to damage kidneys.

*** Age 32 - As successful treatment with Lotronex & Immodium is well underway, Triglycerides are high. LDL at high end of range, HDL at low end of range.


*** Age 33 - Blood pressure has slowly risen from normal to 140/95 over a period of 10 years. Successful Rx treatment with atenlol begins.


What do you think? Is my interpretation totally off the wall? Could I have celiac?

Edited by HowdySunshine, 16 December 2012 - 10:43 AM.

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#2 kareng

 
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Posted 16 December 2012 - 10:28 AM

Have you had any Celiac blood tests? They are doing so much else, you would think that would be easy enough do do! :blink:
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#3 HowdySunshine

 
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Posted 16 December 2012 - 10:43 AM

Have you had any Celiac blood tests? They are doing so much else, you would think that would be easy enough do do! :blink:


I have had the IGg and IGa done twice over the past 10 years. Only this result was notable:

*** Age 24 - Out-of-range gliadin AB IGG moderate positive. Perhaps this reading is because Celiac has caused inflammation in the tissues of the small colon.
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#4 pain*in*my*gut

 
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Posted 16 December 2012 - 04:16 PM

I have had the IGg and IGa done twice over the past 10 years. Only this result was notable:

*** Age 24 - Out-of-range gliadin AB IGG moderate positive. Perhaps this reading is because Celiac has caused inflammation in the tissues of the small colon.


You need to have a new Celiac panel done. There is a new, more specific test called the Deaminated gliadin peptide antibody (DGP) that is very specific for Celiac. If anything in your new bloodwork is positive, consider yourself diagnosed and go gluten free. Heck, I would go gluten-free even if bloodwork is normal! It can't hurt!

Biopsies are notoriously sketchy, and lead to many false negatives. Unfortunately docs put WAY too much emphasis on that biopsy. If I had gone with my idiot GI's advice after my biopsy was negative, I would still be sick as a dog. Even though I had positive bloodwork, tested positive for the gene, had symptoms consistent with Celiac and improved dramatically after going gluten-free, he still does not think I have Celiac and there is "no reason I should be restricting myself with a gluten-free diet"!!! Tell that to my gut!! Ignorant.....
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#5 frieze

 
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Posted 17 December 2012 - 12:52 PM

how many samples were taken in the small intestine? is it possible you were on imunosupressive therapy at the time of the second blood test?
regardless, need to repeat new up to date, celiac panel. Then try the diet for 3-6 months, scrupulously!
good luck.
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