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Just Diagnosed - Questions About Results/symptoms

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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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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'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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    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
    • Yes, that list I posted includes stuff to look out for in your cosmetics as well, I think. Spices get contaminated often depending on brands, sources, and packaging plants, you have to find brands that are certified, I find Spicely Orangics works here. Supplement wise I am on a ton. I take combinations of Liquid Health Brand, Stress & Energy and Neurologic Support for B-Vitamins, I take Doctors Best Chelated Powdered Magnesium. I drink a bunch of almond milk and eat a lot of nuts, seeds, green leafy veggies, and a huge viarity of foods always having a mix to balance out my needs in vitamins (I studied alot an worked with a dietician to learn what contains what and find my balance). I found a IBS targeted probitotic from jarrow seems to work best with me and no bloat. List of other supplements if you want but with celiacs different people can get different deficiencies and you should probably talk to a dietician and see about having your own regiment built up. I just listed the common ones. I was thinking about this later on and after I got off the stuff for awhile I found myself randomly vomiting from some foods, none of the brain fog, numbness, Just throwing up. Ended up I developed intolerance to certain foods like egg yolks, soy, and a few others things. I also developed allergies to corn where I would just get sores in my mouth and digestive tact and run 99-102F Fevers when I ate anything contaminated with it. And a peanut allergy that caused me to distend and swell throwing up for hours and getting a rash later on. My different reactions to different foods made my dietician laugh at how odd my body is (we both did after talking for awhile) and my doctors found it interesting and kept on wanting to run more test.
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