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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.

A History Of My Gluten Woes
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5 posts in this topic

Good day all. I am new to this but have been doing so much research. I apologize for this being so lengthy but I feel like I've been given a new lease on life! I am a 47 year old female.

For years, I've had digestive problems, reflux, bloating, gas, constipation (but stools are loose and messy!), lactose intolerance, IBS, depression, and weight gain issues.

Living in the United Kingdom from 2000-2008:

In 2001 and 2002, I had miscarriages (one at 12 weeks and one at 6 weeks) then unable to get pregnant afterwards.

At 40 years old, was perimenopausal (my first menstruation started 2 months after my 11th birthday)

In 2005, my gallbladder was removed with one massive stone. Digestive issues continued. Then, I found out I had a hernia because of the gb operation, weakend the muscle wall. The hernia op was a big one, then got an internal infection which cleared up with antibiotics.

Then the rashes started. Knees, shoulders, back, neck, behind the ears, butt. I itched all over and didn't know why. The rash was always preceded by an itch and I got to the point I hated scratching because I knew a rash would develop. Prescribed creams didn't do anything and my doctor stated it was an allergy. But to what???

I asked my doctor if I could be celiac, with the rashes and digestive issues. "You're hardly wasting away, so no." That was it. Throughout the years, I would give up certain foods regularly, because "it doesn't agree with me, it must be a sign getting old" Bread was one of those foods.

Back home in Canada since 2008:

I am now on tablets for high blood pressure.

I am on prescribed iron pills (still low iron despite being on the supplement)

I am on prescribed B12 pills for my B12 deficiency - normal levels now, but just at the low end of normal. I asked if I could go off these and was told that if I do, my levels will be too low again.

Began an exercise program, 1 hour per day plus no junk food and smaller portions - actually gained weight! I am overweight but not obese.

But in the past year, I started noticing so many other things that really scared me:

  • No Energy - I couldn't even wash dishes without resting and would have to rest between putting my socks on
  • Fatigue but not being able to sleep at night
  • Couldn't walk down the stairs anymore without experiencing excruciating pain in my knees (down the stairs one by one resting in between)
  • Forgetfulness was scaring me, and the first thing I think Alzheimers.
  • Numbing often on the left side of my face
  • Nightsweats and severe hotflashes, worse than when I first started menopause
  • Extreme blushing/flushing
  • Red cheeks all the time
  • Indigestion, reflux and heartburn intensified
  • A feeling of trembling, vibrating inside me
  • Right ankle pain that sometimes prevents walking - this also has gone into spasm where my toes start curling up and foot turns inwards, pain radiates up shin (massage eases it.)
  • Irritability that put strain on my marriage
  • Sometimes feeling like I can't swallow, have almost choked a few times!
  • There is so much more but I've gone on long enough!

Because I wasn't losing weight and didn't have diarrhea, I accepted it wasn't celiac disease and I attributed everything to menopause. But I feel it is more than that.

I went gluten-free for a month in November 2012, as a test for myself. I actually cried at how well I felt. But it was going to be a month before I could see my doctor, knowing I would have to do the gluten challenge for any tests she wanted done.

I went to my family doctor in early December, and presented to her why I would like to be tested for celiac disease. I had it all written down for her! She was quick to get on the bandwagon and ordered a lot of bloodwork, testing for lupus, arthritis, diabetes, vitamin deficiencies, cholesterol, liver, creatine, and celiac disease screening. I went back on gluten for 2 weeks and the blood test for celiac disease came back positive. Now I am waiting for my referrel for the endoscopy/biopsy. Oh, all other tests came back negative! :)

My doctor has put me back to gluten-free diet only because, in this part of Canada, it could take months for my appointment and she doesn't want me to suffer anymore than I have to. The good thing is with it being months away, I'll have a few months from the date my appointment is scheduled to when I actually go for the biopsy, so a few months for the challenge.

But after all these years of fear and suffering, there's finally a possible reason and I look so forward to feeling normal. I don't know if I've ever felt normal because everything associated to being glutened has been the norm for me! Thank you for reading and thank you for this wonderful site! Good day to all!

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I'm so glad you figured out what was wrong! Good for you! I hope you continue to feel better on the gluten-free diet. :)

BTW, are you in Alberta? It takes forever and a day to see a specialist here.

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Keep on making discoveries and conquering them! Get well, and stay well.

Diana

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I'm so glad you figured out what was wrong! Good for you! I hope you continue to feel better on the gluten-free diet. :)

BTW, are you in Alberta? It takes forever and a day to see a specialist here.

Thank you!!

No I'm in Northern Ontario. I'll have to travel 600 km round trip for the Specialist. But it's all worth it. I think I've just out of the blue shed tears of relief since hearing about the positive results. And try as you might, you cannot get anyone to understand what you are actually feeling, unless they've experienced it themselves. Hubby was getting frustrated because I couldn't do anything, wasn't contributing to household chores, family peeved because I never visit and was always too "lazy" to go out. And this forum is fantastic!

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Keep on making discoveries and conquering them! Get well, and stay well.

Diana

Thank you so much! It really is a journey of discovery. I look forward to full swing gluten-free because to actually start feeling good, wow! I know how good I felt in the one month gluten-free, and then how awful I felt during the gluten challenge. Day 2 of being gluten-free again.... nice to not have a bloated belly! :)

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