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

Other Conditions That React To A Gluten Free Diet

MrRoper

Recommended Posts

MrRoper Newbie
MrRoper
Posted

Hi Everyone,

Well this has been my first post for a long time, and I am looking for some advice on other conditions that may react to a gluten-free diet.

First a little history, I have suffered from "IBS" like symptoms for 6 years now, mainly discomfort and Constipation that is constant daily. I have lost weight, have no appetite and seem to suffer from memory loss, fatigue and a general feeling of 'malaise', I have also had some other symptoms of malabsorbtion/ malnutrition such as finger clubbing and whitening of my finger and toe nails.

The doctors have ruled out all the "sinister" causes of this such as renal and liver failure etc and have left me to get on with it. telling me there is nothing else they can check. I have had a Celiac screen and endoscopy about 3 years ago (1-2 years after symptoms started) which were both negative.

I did try a Gluten Free diet a couple of years ago, however I dont think I was very strict, and looking back im sure I cheated at least once or twice within a 2-3 week trial.

About 4 weeks ago I started a strict gluten free diet, cooking and preparing my own food and making sure I dont cheat. the last 2 weeks have been the best 2 weeks I have had in 6 years. My BM`s are regular, i have experienced hunger pangs and already seem to have more energy. I aslo can realise now how bloated I have been, my stomach doesnt feel like mine its so flat!

My main question is what is the likelyhood of this being mis-diagnosed celiac, or are there other conditions that would react to a gluten-free diet in such an immediate fashion?

Many thanks in advance

Chris (UK)

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

Celiac.com Sponsor (A8-M):


Metoo Enthusiast
Metoo
Posted

The blood test is notorious for false negatives, There 30% failure rate on the blood test to not diagnose people who do infact have celiac.

The endoscope if your doctor did not take enough biopsies or take them incorrectly can give you a false negative.

I too went gluten free 2 years ago for a month. It didn't help at all.

This time I went truely gluten-free. I realized last time that I did NOT do a good job of being gluten free, and thats probably why I didn't see results. This time after 3 weeks I felt like a new person!!! I have a negative blood test...but I know I have celiac. There is no doubt in my mind now. After 2 months gluten-free, a piece of pizza makes me break out in a horrible rash on my hand.

There aren't any other specific gluten related diseases.

ravenwoodglass Mentor
ravenwoodglass
Posted

About 4 weeks ago I started a strict gluten free diet, cooking and preparing my own food and making sure I dont cheat. the last 2 weeks have been the best 2 weeks I have had in 6 years. My BM`s are regular, i have experienced hunger pangs and already seem to have more energy. I aslo can realise now how bloated I have been, my stomach doesnt feel like mine its so flat!

My main question is what is the likelyhood of this being mis-diagnosed celiac, or are there other conditions that would react to a gluten-free diet in such an immediate fashion?

Many thanks in advance

Chris (UK)

The chances of your being misdiagnosed and actually celiac are really pretty high as the other poster mentioned. Your excellent response to the diet followed strictly is the best 'diagnosis'. Glad to hear you are feeling so much better. Sometimes our bodies give us the answer that doctors can't.

researchmomma Contributor
researchmomma
Posted

The blood test is notorious for false negatives, There 30% failure rate on the blood test to not diagnose people who do infact have celiac.

The endoscope if your doctor did not take enough biopsies or take them incorrectly can give you a false negative.

I too went gluten free 2 years ago for a month. It didn't help at all.

This time I went truely gluten-free. I realized last time that I did NOT do a good job of being gluten free, and thats probably why I didn't see results. This time after 3 weeks I felt like a new person!!! I have a negative blood test...but I know I have celiac. There is no doubt in my mind now. After 2 months gluten-free, a piece of pizza makes me break out in a horrible rash on my hand.

There aren't any other specific gluten related diseases.

There may not be another other "specific gluten related DISEASES" but Non-Celiac Gluten Intolerance can wreak havoc on the body including digestive, neurologic and skin issues. Just my two cents.

bbdailey Explorer
bbdailey
Posted

People with hashimotos disease have had positive results on a gluten free diet. I myself have hashimotos disease and being gluten free has helped me a lot. I still have problems and I have been gluten free for 8 months so I am unsure whether I am still recovering or if I need thyroid medication. Either way being gluten free has helped a lot!

GFinDC Veteran
GFinDC
Posted

Some people with Crohn's also follow the gluten-free diet and get results. Others don't. There are many associated auto-immune conditions with celiac and all of them in theory could respond to a gluten-free diet. But they won't always respond. If you can imagine celiac as a an AI switch, sometimes you turn the switch for another AI disease on and you can flip it back off by following the gluten-free diet. But sometimes the switch gets stuck in the on position and won't go off again. There's no way to tell what will happen with that switch scenario ahead of time that I am aware of at least.

Skylark Collaborator
Skylark
Posted

Non-celiac gluten intolerance is most likely what you have. It's supposed to respond faster than celiac, and it can make people quite ill.

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

Celiac.com Sponsor (A8-M):


Michelle L Apprentice
Michelle L
Posted

From reading your post and the symptoms, some similar to mine, i would guess you are gluten intolerant/celiac disease. I found out I had thyroid problems, (also related to celiac/gluten intolerant) and thats when I started seeing doctors. I told my one doctor I was starting a gluten free diet since he didn't know what was wrong with me and he proceeded to tell me not do that and i didnt have that...Later, I ended up finding I was gluten intolerant via an allergy test through a nutritionist. I think its important to listen to your body a lot and if you feel noticeably better on a gluten free diet, it could likely mean you are gluten intolerant. Also, like someone else mentioned, theres a 30% false negative rate with the official tests...so could have been misdiagnosed.

  • 2 weeks later...
MrRoper Newbie
MrRoper
Posted
  • Author

Many thanks for all your replies,

I have been tested for Hashimoto`s and that was negative, although I did think this could be a thyroid disorder as it does run in the family, however my last thyroid test which was done 2 years ago was clear.

I have been suffering from a new and worrying symptom for the last 2 weeks and I was wondering If anyone had any insight on this new development.

Along with my finger nails turning white I have had a real intense pain and tingling in my fingers, especially under the finger nails. Also at time my finger nail beds have a bluish tinge which isnt a dark blue but more of a light purple :-O

I am still responding to the Gluten - free diet and taking Kefir to try and sort any gut imbalance!

GFinDC Veteran
GFinDC
Posted

Hi,

Those could be symptoms of Raynuad's. Or not. You should probably see a doctor about it though.

Open Original Shared Link

In medicine, Raynaud's phenomenon is a vasospastic disorder causing discoloration of the fingers, toes, and occasionally other areas. This condition can also cause nails to become brittle with longitudinal ridges.

domesticactivist Collaborator
domesticactivist
Posted

Your case sounds like nonceliac gluten intolerance or misdiagnosed celiac. Other conditions we've seen respond positively to the gluten-free diet are hashimoto's, graves, rheumatoid arthritis, PCOS, dyslexia, add/ADHD, neurological weirdness, body odor, canker sores, poor dental health, and I'm sure I'm missing many others :)

mushroom Proficient
mushroom
Posted

I first went gluten free in hopes of getting rid of rheumatoid arthritis after seeing a friend treat his ankylosing spondylitis (another rheumatoid arthritis) with gluten free. As domesticactivist says, it can be helpful in many conditions, even autism, moderating symptoms if not effecting a cure.

Archived

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

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


  • Member Statistics

    • Total Members
      131,196
    • Most Online (within 30 mins)
      7,748
    Dreamstar
    Newest Member
    Dreamstar
    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...