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

I'd Love To Eat A Normal Diet Again


DonnaEm

Recommended Posts

DonnaEm Newbie

I'm a 53 year old female with a 35 year history of Hashimotos. Most of my family have autoimmune disorders (Addisons, Graves, Psoriasis, Rheumatoid arthritis). About 5 years ago I started to become unwell, eventually ending up with daily diarrhoea, (massive amounts of floating, yellow stuff – sorry for the TMI) nausea, weight loss, bloating, abdominal pain, anaemia which didn’t respond to iron pills, dizzy spells, muscle pain and fatigue.

I consulted a doctor 2-3 times a year. I had heaps of tests and scans but repeatedly got told there was nothing wrong and I just needed to take my iron pills (I already was) and have a holiday! 

I finally worked out for myself that carbohydrates made me feel worse so I slowly excluded all bread, cake and biscuits from my diet which improved my digestive problems a bit but, overall, not a huge help. Finally, in desperation, I tried a different Dr.  He said that he thought he knew what the problem was and tested me for celiacs (which I’d never heard of). He never asked me about my diet.

The test was negative but I do carry the DQ2 (?) gene.  He advised me to try a gluten free diet anyway which I reluctantly did.  Within a few weeks I felt better than I had for years. I’ve been (99%) gluten-free for a year now and my former good health is mostly back which is great and I’m really grateful.

My questions: 1) could a celiacs test be negative if someone is still eating a small amount of gluten? (ie muesli a few times a week and pasta once a week)

2)  if I do not have celiacs then is it ok to eat normal food sometimes?  Bread is completely out but I do seem to be able to tolerate an occasional bit of pastry. Sometimes I would choose to eat "normal" food when out but is it causing damage if it does make me sick? 

 

I don’t really want to talk to the Dr about it – my faith in them is pretty low!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Yes, results can be negative on celiac testing if you are not consuming gluten daily! You need to make sure you had the complete celiac panel. I have Hashi's and I tested positive on only the DGP IGA test. The others were all negative yet I had moderate to severe intestinal damage. If you do not have celiac disease, Non-Celiac Gluten Intolerance, or even a wheat allergy, then eat gluten! If you do have celiac disease, every gluten exposure sets off an autoimmune response and your intestines get damaged. It may even impact your Hashi's. It can certainly interfere with the absorption of your thyroid replacement medication (that should be gluten free too).

If you decide to go gluten-free because you really think you have celiac disease, then no cheating ever! If you are unsure, do the gluten challenge for two to three months and get re-tested. It migh help you adhere to the diet.

DonnaEm Newbie

Thank you very much for your reply and your advice. I didn't realise there was more than one test. I will consider my options.

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 Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    3. - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,385
    • Most Online (within 30 mins)
      7,748

    Jeff Arn
    Newest Member
    Jeff Arn
    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
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
×
×
  • 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.