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Other Conditions That React To A Gluten Free Diet

MrRoper

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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)

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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.

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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.

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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.

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