Questions To Bring To Celiac Specialist

[jenvan]

aside from thyroid, it would seem you have some anemia going on...

[Guest BERNESES]

That's what I was thinking- it might explain the fatigue! Do you know, Jen, or anyone familar with thyroid, just how out of whack that is? Thanks Jen, Beverly

PS Will probably post the thyroid on Related Disorders too.

[jenvan]

not sure...my mom has hash's. but never studied the tests much to know. might mean nothing since it is borderline...but i certainly won't say. good question to follow-up with doc.

[Claire]

I got my preliminary blood work back today (not the gene test). Here's what was off:

My red blood count: 3.87 (low, scale 4.2-5.4)

MCH 32. 7 (high, scale 27-32)

Ferritin 7. 9 (low, scale 13-150)

Thyroid PTH 66 (high, range 15-65)

What does this all mean? None of it looks too bad. I haven't talked to her but assume I will when the gene tests come in. I'm most curious about the ferritin (iron, right) and the thyroid PTH (does this mean I have hyperthyroid?). Thanks evryone, Beverly

Still have a bone scan and abdominal ultrasound- fun, fun, fun!

This information may be of use to you:

PTH is a protein hormone secreted by the parathyroid gland which is the most important regulator of body calcium and phosphorus.

PTH:

Increases the calcium and phosphorus release from bone

Decreases the loss of calcium and increases the loss of phosphorus in the urine

Increases the activation of 25-hydroxy vitamin D to 1,25-dihydroxy vitamin D in the kidneys

Secretion of PTH is regulated by the level of calcium in the blood. Low serum calcium causes increased PTH to be secreted, whereas increased serum calcium inhibits PTH release.

Normal Values Return to top

Normal values are 10-55 pg/ml. Normal value ranges may vary slightly among different laboratories.

Note: pg/ml = picograms per milliliter

What abnormal results mean Return to top

Greater-than-normal levels may be associated with:

Chronic renal failure

Hyperparathyroidism

Malabsorption syndrome (inadequate absorption of nutrients in the intestinal tract)

Osteomalacia (adults)

Rickets (children)

Vitamin D deficiency

Source; Open Original Shared Link Claire

[Guest BERNESES]

Thanks Claire and Jen- I guess I'll have to wait and see what the doctor says. Best, Beverly

claire- I found the malabsorption part especially interesting!

[CMCM]

I am myself trying to understand the difference between the two. Right now, I am trying to counsel my sister. I had FINALLY talked her into going for the bloodwork for celiac because she has ALL the same problems as me, except instead of the big D, she has the big C. Her bloodwork came back negative and basically was told by the GI, "You don't have it, don't worry about", end of story..... I am trying to explain to her that you can have gluten sensitivity or gluten intolerance without actually testing positive for celiac.

I am thinking of buying her the book "Dangerous Grains". I myself have not read it, but have hear very good reviews. For those of you who have read it, would it help my sister in understanding?

Hugs.

Karen

Well, I too am trying to figure out the gene thing. Having one celiac gene and one gluten sensitivity gene and positive for casein sensitivity, and negative to intestinal damage, where to go from here? Enterolab and others recommend that once you are positive and know you have the genes, that you stay firmly gluten (and in my case, casein) free entirely. Yet, if having these things for my entire 56 years has not produced intestinal damage, how do I view this? Obviously I know I can't eat MUCH of these things because I'm frankly very tired of suffering the ill effects of constant gluten and casein ingestion. But my question is this: how critical is it really to 100% eliminate these things??? And ultimately, what does having these 2 genes really mean anyway? I have the PREDISPOSITION to celiac disease, but I don't appear to actually have it at this point in time because there is no apparent intestinal damage....or perhaps only a biopsy would reveal that, and I don't intend to go that route.

As for Dangerous Grains, it's a great book in general. It pays to be educated in this subject. Also, the book "Going Against the Grain" is really good as a second book to read because it discusses all sorts of allergies in general and how the body is affected. I found it very useful for increasing my own understanding of everything.

Ultimately, I guess nobody really knows definitively about all this. A lot of it is speculation based on existing knowlege, but not a lot is actually certain.

[Claire]

There are many people with celiac disease who do not have intestinal damage. That is not the only kind of damage that the disease does. It also sets you up for other autoimmune diseases which often don't appear until you are older - when you least need them.

The one gluten sensitivity gene is to be concerned about because while there may be no intestinal damage with this (there sometimes is) neurological damage is very much associated with it.

You might look into how small an amount of gluten it takes to initiate and sustain a reaction in the body. These reactions do cellular damage - even if you cannot immediately see it. By the time neutological damage is evident to you it is too late to prevent it.

I wish I had known how to prevent it. I learned too late. Claire