Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
Flaykee
Posted

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
nvsmom
Posted

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
1desperateladysaved
Posted

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

Diana

Flaykee Rookie
Flaykee
Posted
  • Author

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
Flaykee
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...