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Diagnostic Testing History - Do You Think Its Celiac?
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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
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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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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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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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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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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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