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

Other Conditions That React To A Gluten Free Diet


MrRoper

Recommended Posts

MrRoper Newbie

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

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

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

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

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

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

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

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

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

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

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

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.

  • 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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.