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

Hi - Diagnosis Not Yet Official But, I Feel Ive Come Home!


bev40

Recommended Posts

bev40 Rookie

After years of suffering which became so much worse in the last year, i have been gluten free now for 3 weeks and already i feel so much better than i have in such a long time. And its a wonderful feeling! :)

I am a 41 year old female from England and up until 3 years ago i was fit and active and had a wicked sense of humour, i loved life and i lived it to the full, well, almost :P

My problems started with a constantly bloated stomach, constant constipation and a weight gain that seemed to be out of my control. I also had a general malaise with a feeling of depression that i could just not shift. I spent hours and many pounds in health shops trying to find a solution. Everything that was happening was complete;y out of character for me. Over the following years my problems persisted but added to them was skin blemishes and a chronic fatigue and the depression increased. The problem got so bad and i felt so miserable and unwell but i just couldnt put my finger on why i was feeling like i was.

Things came to a head last july when i collapsed at work and the doctors thought i had had a stroke as i had numbness and pins and needles in my face, arms and legs. After further tests its was thought that i had MS as by this time i couldnt walk properly and i was having problems with my balance and suffering from night blindness as well as burning in my limbs. I felt as though i was dying on my feet. I suffered from a constant brain fog, not being able to recall or remember anything.

A month ago i went to my GP with exhaustion, i just did not have the energy to move let alone do anything else. Blood tests revealed that i am anaemic and my GP being the good egg that she is wanted to know why so she referred me for tests on my bowel stomach. I had more bloods taken, an endoscopy and a very unpleasant colonoscopy. While taliking to the consultant he said he was going to test me for coeliac disease. I had never heard of this before so once i had recovered from the camera action i decided to look it up on the internet. Oh boy! It was like a light bulb going on!

Thirteen years ago i was dx with thyroid disease which i discovered can be linked to coeliac disease. My thyroid has never ever been stable. I have blood tests every 3mths and my medication ranges between 175mg and 200mg. I also discovered that unteated coeliac disease can cause the exact neurological problems i was experiencing.

I was so excited at all i discovered that i decided i had nothing to lose by giving gluten free a go. And here i am, 3 weeks later, brain fog gone, jpint pain gone, fatique much improved and i can walk properly!!!

I am not self diagnosing or anything like that, im not jumping the gun beofre i get the test results and saying that i have coeliac disease but, i know for sure that i am feeling so much better than i have in a long time. Regardless of the test results i will stay gluten free.

I have recently gone dairy free too after realising that i wasn't reacting very well to milk. When you have experienced feeling well after feeling so ill you certainly recognise when you are feeling ill again :)

I discovered your site whilst doing my research. I hope you dont mind my introducing myself and saying hello. Im sorry if i have waffled on a bit and i hope i haven't bored you too much. Its the excitement - i can hardly contain it :D

I could have gone into more detail but i don't want to be 'expelled' at such an early stage ;)

I would welcome any responses, especially from people who may have experienced similar problems to myself.

Thanks for listening


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Hi Bev, and welcome into the board! Your symptoms sound very familiar, and I wouldn't be a bit surprised if your tests come back positive. The best test is how you feel after going gluten-free. I'm glad to hear that you're feeling so much better. Continue to come and chat, and ask any questions that may come up along the way. Glad you found us :)

mmaccartney Explorer

as you put it, welcome home!

It sounds quite probable that you have some form of gluten intolerance. If you are already feeling better and the only change was the gluten-free diet, it sure does sounds like it!

mommida Enthusiast

Welcome to the board! Sounds like you belong here, whatever the test will say.

L.

Canadian Karen Community Regular

Hi! Welcome to the board!

You definitely have come to the right place! It sounds like a classic case of celiac to me. Even if your tests come back negative, the fact that you have reacted so positively to the gluten-free diet that at the very least, you are gluten intolerant. Also, if you do have villi damage due to celiac, it is extremely likely that you are also lactose intolerant (at least until your villi grow back), as the end tips of the villi is where we digest the milk.

Any questions you have, just fire away! We've all "been there/done that"! :lol:

Hugs.

Karen

TCA Contributor

Welcome to the board. I'm so glad you feel better. I hope the improvement continues. My kids couldn't tolerate dairy at first, but are fine with it a little while into the diet...

lonewolf Collaborator

Welcome Bev! You're definitely in the right place. Glad you're feeling better already. Let us know how we can help!


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748

    Lizzy W
    Newest Member
    Lizzy W
    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

    • Jane878
      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
      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.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...