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

Those With Gluten Intolerance, Especially Severe..

beebs

Recommended Posts

beebs Enthusiast
beebs
Posted

Hi guys,

Can those who have gluten intolerance please tell me your symptoms -I am trying to work out the difference as I am undiagnosed and am probably going to remain that way (not by choice).

So I am trying to work out which is more likely.

Thank you!!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Although I am officially diagnosed celiac some doctors would consider me gluten intolerant because I don't show up in blood tests and don't have one of the two most common associated genes (in the US anyway they are considered celiac genes in other countries).

My symptoms were very severe and well advanced by diagnosis and are in my sig. Personally I consider GI, GS and celiac all the same thing.

beebs Enthusiast
beebs
Posted
  • Author

Although I believe that if you have gluten intolerance as opposed to Celiac you are at no higher risk of other autoimmune diseases, is that true?

ravenwoodglass Mentor
ravenwoodglass
Posted

Although I believe that if you have gluten intolerance as opposed to Celiac you are at no higher risk of other autoimmune diseases, is that true?

I don't think enough is really known about GI or Celiac to say for sure one way or another.

beebs Enthusiast
beebs
Posted
  • Author

Ok, thanks :)

Apparently there is an interesting study on GI that has come out of Melbourne, Aust - our Paed GI recommended I read it, but I have forgotten his name. I'll link it if I can find it!

Roda Rising Star
Roda
Posted

My oldest son is not celiac (negative blood work 4 times and negative biopsy). He had major constipation issues since birth and dropped on the growth curve by the time he was 12 months old significantly. At one point he was on miralax for appx. 1.5 years. We just thought he was going to be small. He stayed pretty consistant at the 25th percentile but then he started to drop again at age three. He is 10 (will be 11 in Feb.) and is one of the smallest boys in his class. After my youngest son was diagnosed with celiac and went gluten free last Nov. (he really has been growing like a weed since), my oldest son's slow growth became really apparent. My 6 almost 7 years old is really gaining on his brother. The most recent complaints for him were almost daily stomach pains, gas and bloating. He still didn't have a BM only about every 3-4 days. I put him gluten free the end of August and things I have seen improvement in are: he has gained 5 pounds, his feet grew(they hadn't grown in over a year), he is starting to grow in height as some of his jeans are starting to get short, no more daily stomach pains/bloating/gas, his color has improved, and he is regular for the first time in his life going at least every to every other day.

Di2011 Enthusiast
Di2011
Posted

The article is likely to be associated with medical professional Bob Anderson. He is one of our leading celiac/gluten researchers.

Open Original Shared Link

Highly recommend all GI/celiacs read about his work.

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.

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


  • Member Statistics

    • Total Members
      132,143
    • Most Online (within 30 mins)
      7,748
    Tracy Williams
    Newest Member
    Tracy Williams
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.