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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Just Diagnosed - Questions About Results/symptoms
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4 posts in this topic

Hi, I was just diagnosed last week and am feeling very overwhelmed! I've been reading through some posts over the last few days while I digest all this.

I started having a lot of joint and muscle pain and fatigue about 6 months after the birth of my first baby. My GP chalked it up to normal postpartum stuff but it kept getting worse and I eventually saw a rheumatologist who did a Celiac panel and referred me to a GI specializing in Celiac. The endoscopy confirmed the diagnosis. I'm grateful the rheumatologist took my concerns seriously -- this whole process has only been 9 months which I guess makes me lucky. I have a few questions I hope someone might be able to help answer.

1. I'm going back to the GI and to see their nutritionist in a few weeks, but curious what exactly this means on my biopsy results? "Partial to subtotal villous atrophy, crypt hyperplasia and intraepithelial lymphocytosis, consistent with Celiac Disease." Google only got me so far.

2. Two symptoms I've had but failed to mention to my doctor because the joint pain was the overwhelming problem are hair loss (big clumps in the shower drain) and a strange numbness/pain around my rib cage area. Could those be related to Celiac?

3. My kind hubby went out and bought a bunch of gluten-free products but some say they were made in a facility that processes wheat. Should I avoid? How will I know how sensitive I am if I never had any digestive problems? I read on the newbie thread that I should try to avoid some of that packaged stuff anyway to start, so I guess I'll try that.

Thanks in advance!

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Hi kam318, welcome to the forums! I can't answer all of your questions, but for number 2 I'd say yes, those 2 issues could very well be related to celiac. And for number 3, if they're made in a facility that processes wheat, you may be o.k., but you might want to do a search here by product name and see if others have had any issues. I'd mostly stay away from anything processed on the same equipment as wheat, but the same facility may be o.k.

As for telling how sensitive you are, I have (had) similiar symptoms to you -- joint pain and fatigue. Most likely if you start getting painful joints along with fatigue, that would suggest being glutened. Also good plan on avoiding some of the packaged stuff to start. :)

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Welcome!

Here is a basic explanation of the Marsh Scale used to type Celiac Disease - looks like your biopsies were likely Stage 3A or 3B.

Stage 1, the cells on the surface of the intestinal lining (the epithelial cells) have more lymphocytes (white blood cells) among them than normal - Stage one is not specific to Celiac Disease.

Stage 2, the changes of Stage 1 are present (increased lymphocytes), and the crypts are larger than normal.

Stage 3, the changes of Stage 2 are present (increased lymphocytes and larger-than-normal crypts), and the villi are shrinking and flattening (atrophy). There are three levels of Stage 3:

3A--Partial villous atrophy

3B--Subtotal villous atrophy

3C--Total villous atrophy

Yes, your the symptoms you listed as well as a few others you may have dismissed as a little this or a little that will likely improve given time gluten-free.

It is best to stick to whole foods while newly gluten-free and use processed gluten-free items as treats, not for the bulk of your diet. Some people can tolerate items with all gluten free ingredients processed in a shared facility and others cannot. It is best to avoid those until you have been gluten-free for long enough to determine your level of sensitivity.

Keep reading...it's a tough and frustrating process, but it does get much easier with time.

Hang in there :)

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Welcome :)

Hair loss can be related to celiac I think, but can also happen in the months after having a baby.

It is good you got a clear diagnosis, hang in there. It can be a bit of a rollercoaster while you get the hang of it, but there is great advice and support here

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