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 Celiac.com!
    eNewsletter
    Donate

adjustment during gluten challenge? (And insomnia as a symptom?)


DandelionH

Recommended Posts

DandelionH Apprentice

Hi all!

I'm not expecting a big response to this post and I know it's all personal etc. anyway but I was diagnosed through blood tests (and family history just over a year ago and have been gluten-free and happy as Larry but now have to do another gluten challenge because some of the tests at the doctor were found to be errors etc.  (I know... shocking... but whatever... moving on...)!

I started 2 days ago and was THRILLED to find I didn't react to wheat protein as a tiny bit of a vegie burger I'd been craving (and I've been eating meat since diagnosis but miss vegetarianism. If Coeliac I may return to it anyway but it's definitely a lot easier with wheat so I took the challenge as a thumbs up to go back to vegetarianism and that was more exciting than the idea of gluten again! But I digress...).
Last night I had one of my favourite old pies which is sourdough wholewheat. And for the first time in 6 months I woke at 2am and didn't go back to sleep (which was my life pre-diagnosis but I always thought it was just stress). But my stomach was ok.
This morning I have the whole loose bowels thing happening (but still not THAT bad) which is unusual for me.

My questions are (sorry, underslept... hard not to ramble):

-If you did a gluten challenge but were not found to be Coeliac, did you still find you had adjustment issues that could simply be your stomach reacting to a new protein after not having it for a while? Seems both logical because bodies are sensitive and also not because people don't react when they try rye bread for the first time or something, right?

-Can insomnia be a symptom? Not because of RLS (which I've only been getting since going gluten-free actually and is the only reason I ever and rarely stay awake at night) or pain but just...awakeness?

-And how long do your symptoms take to really kick in (but I'm sure that one has been answered in other threads and I look forward to reading a ton on here over my next week!).

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Jmg Mentor
10 minutes ago, DandelionH said:

 
-If you did a gluten challenge but were not found to be Coeliac, did you still find you had adjustment issues that could simply be your stomach reacting to a new protein after not having it for a while? Seems both logical because bodies are sensitive and also not because people don't react when they try rye bread for the first time or something, right?

I did the challenge and had a negative biopsy. Digestive issues aren't my biggest immediate gluten symptom, but they did start pretty soon (within 2-3 hours from memory) after the challenge began.  I've never noticed a reaction to a new protein like that, but I can't say I ever used to notice such things until I became more aware of my body and my digestion. 

Within a couple of days I started to get more symptoms with different things becoming noticeable over the next weeks. Interestingly I never got the full level of symptoms I'd been experiencing  before going gluten free for the first time, so maybe I actually needed a longer challenge than I dared undertake. 

I don't think insomnia has been a gluten issue for me, but its difficult to say for sure. I used to get very sleepy after a meal, that changed with the diet. So I've generally been far more awake since gluten-free.

Perhaps I'm in some ways lucky however. You sound like you'd be happy to add wheat back into your diet if you get a negative test result?It's something I couldn't even contemplate. There were too many correlations when I undertook the challenge, too many disparate conditions which either fully or partially resolved. So I had no problem permanently eliminating gluten biopsy notwithstanding. The challenge, along with a subsequent glutening  by a food I'd erroneously thought was gluten-free gave me sufficient correlation to embrace the diet. 

Good luck in finding answers!

Link to comment
Share on other sites
DandelionH Apprentice

Hello!
Thanks for the reply and such thoughtful info. Sounds like it's been quite a journey for you but you're sure of where you stand. I can't wait to feel that way!

Yes, I'd be glad to add gluten back, because I feel better as a vegetarian than eating meat and vegetarianism is more difficult without gluten (doable but difficult) and I've just reintroduced dairy for the first time in 2 decades (I stopped eating it before I became vego because it gave me stomach cramps. It doesn't anymore, it seems, but does TOTALLY knock me out. Like...10 hour sleeps and that isn't my style and like pulling over to the side of the road after lunch. But then again, before going gluten-free everything used to do that. Which is sort of why I'm confused that now when I eat it I'm totally wired!). It would simplify things.
That said, I'm ok without it and would never have thought to add it back if they hadn't called me with such weird news suggesting it was worth rechecking.

Bleurgh.

I was liking being sorted one way or another...

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
×
×
  • Create New...