New, Confused, Overwhelmed, Frustrated, Help

[melgag21]

Hi! I have found so much useful information here, much more than my doctor can give me. My basic question is: what differentiates celiac disease and gluten sensitivity? Is it having the "celiac" genes? Or having intestinal damage?

My background:

Diagnosed at 18 years old with osteopenia. Started calcium/vitamin D.

Since then have broken 3 bones without knowing how, lol.

Life went on, got married, had 2 kids (c-sections). Since having daughter in May 2010 I've lost 90 pounds! Some obviously baby weight but I am now 20 pounds less than my normal. Not complaining, but...

In March 2011 I came down with the "stomach bug". After 3 days, went to the ER. Said "viral", my liver enzymes were high and I had some inflamed lymph nodes. Went home the next day. The day after that, had some whole wheat pasta for dinner and got a pain through the night so went back the following day. I had cholecystitis and many many gallstones. Had gall bladder out and went home. Ever since then I have had diarrhea multiple times a day, even following the gall bladder diet. Sever stomach pains.

I have iron deficiency anemia. The diarrhea is between 2 and 7 times every single day. Horrible. I used to be constipated before all this.

Went to GI. Did scope, which revealed:

"mild nonspecific inflammatory changes with an increased of mixed anflammatory cells in the lamina propria and a few intraepithelial lymphocytes within the crypts and RARE villi with good overall presentation of the villi"

One sample also did not survive processing.

So dr calls, suspects celiac. Went for bloodwork.

Results:

transglutaminase IgA autoantibodies <3

reticulin iga autoantibodies: < 1:10 titer

endomysial autoantibodies Iga <1:10 titer

gliadin antibody igg: <3

gliadin antibody iga:<3

Stool tests were all fine except some crystals in it that dr said was from fat.

So they dismissed me pretty much. THe office is horrible. In the meantime I had done Enterolab and these are the results:

E) Gluten Sensitivity Stool Panel

Fecal Anti-gliadin IgA 28 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 12 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

Interpretation of Fecal Anti-gliadin IgA: The level of intestinal anti-gliadin IgA antibody was elevated, indicative of active dietary gluten sensitivity. For optimal health; resolution or improvement of gluten-induced syndromes (mainly falling into six categories abbreviated as NAAAGS

[IrishHeart]

You have gluten sensitivity for sure, as indicated by the genetic and stool testing. The stool sampling test results interpretation indicates you should follow a strict gluten-free diet. It also says you "cannot rule out microscopic colitis"--did you bring this to the attention of your GI doctor??

You say your GI doctor "suspects" celiac and the biopsy says "indicates RARE villi"--does that mean there are so few, they are RARE?? This is not very clear at all! What did he say at your follow up appointment? Ask HIM to CLARIFY what the diagnosis is. Did he test your liver enzymes, for example? How about your iron, folate and B-12 levels? Is your iron deficiency resolved from treatment??

You have anemia, osteopenia (that is awfully young to develop that--what was the CAUSE?? and how are you treating it??), elevated liver enzymes and have suffered impaired gall bladder function, resulting in removal--and yes, these can all be related to gluten intolerance/celiac.

(I had/have all of them myself.)

Given your symptoms, health history, testing results and ONGOING digestive problems resulting in weight loss and probably, dehydration and malnutrition --if he still does not know--- I would seek help from another doctor. Do not continue developing symptoms/issues.

Bring copies of all the testing results with you and keep copies for yourself. In any event, after all future testing is completed, you definitely should go gluten-free. Just my opinion, but you sure sound like one of us.

In answer to your other question: Celiac develops in people who are predisposed to it by having the gene, consuming gluten, and having the disease triggered by a trauma, such as a surgery, accident, virus, illness, pregnancy, etc.

Gluten sensitivity has a wide range from sensitive, to intolerant to full-blown celiac (which tends to activate vitamin/mineral deficiencies and other autoimmune diseases with it)...and the only resolution/treatment is a gluten-free diet.

Here is a link that explains the differences.

Open Original Shared Link

EDITED TO ADD....I just noticed --after writing all that --that you have posted almost the exact same questions already on the forum and received knowledgable answers from the "real pros" on here

Sweetie, the answer is still the same.

Best wishes.