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Diagnostic Testing History - Do You Think Its Celiac?


HowdySunshine

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HowdySunshine Rookie

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?


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kareng Grand Master

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

HowdySunshine Rookie

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.

pain*in*my*gut Apprentice

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.

frieze Community Regular

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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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