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Just Diagnosed - Questions About Results/symptoms


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3 replies to this topic

#1 kam318

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Posted 24 October 2012 - 09:20 AM

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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#2 ciamarie

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Posted 24 October 2012 - 09:58 AM

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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Gluten-free since the end of October 2011

#3 GottaSki

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Posted 24 October 2012 - 11:37 AM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 Celiac Mindwarp

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Posted 24 October 2012 - 12:26 PM

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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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image


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