Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

A History Of My Gluten Woes


Flaykee

Recommended Posts

Flaykee Rookie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

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.

1desperateladysaved Proficient

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

Diana

Flaykee Rookie

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!

Flaykee Rookie

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! :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Anne G posted a topic in Related Issues & Disorders
      0

      celiac disease and braces

    2. - trents replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    3. - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    4. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    5. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,434
    • Most Online (within 30 mins)
      7,748

    Malia Ana
    Newest Member
    Malia Ana
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Anne G
      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and did it cause any problems or issues with gum recession?  Her dentist seemed oblivious that celiac patients are at higher risk of gum disease /cavities. Her bottom teeth are crooked but are pretty hidden even when she smiles. Thank you!!
    • trents
      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.