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

New, Figuring Things Out.

bifidus

Recommended Posts

bifidus Newbie
bifidus
Posted

Hi everyone. First time posting. So after the last year and a half of suffering and two seperate docors telling me there was nothing wrong with me, I think I have pinpointed gluten as the problem. All the high night time cortisol, insomnia, gut pain which I thought were parasites, but never got any out ( except candida), blurry vision, hypoglycemia, bone and joint pain- my endo said i was too young to do a bone density scan, can you believe it? (I am 36) and referred me to a nuerologist, pyschiatrist- didnt even do any hormone level testing, just for diabetes. I had been getting baaad muscle cramps, then discovered magnesium and realized I was severely deficient in that. And my acidity level which stayed around 6. All the collagen wasting, muscle loss, it all makes sense.

About 2 to 3 months ago, I decided to go raw vegan. The first thing I noticed was my digestion improved immediately. the next day, normal stool. Then one day after doing 3 huge green smoothies before 2, I realized it was 8 pm and I wasnt hungry, no hypo and i slept 8 hrs that night, no drugs. People said I looked better. Well I work in a restaurant and it is near impossible to keep up the number of calories unless you are UBER prepared, and even then you cant stop and eat, so after about a month I decided to eat" regular food" again, just to make it through my shifts. Well the the glassy, blurry eyes with th horriffic brain fog came back, and I thought maybe the meat is too hard on my liver. The pain I was feeling that I thought was my liver may very well be the duodenim/gallbaldder area becaus after ingesting large amounts of magnesium citrate( in addition to the fact i drink lots of lemon water all day long) I had a 3 day stint in the bathroom, with what I think were stones all floating on top, hundreds, some were green, i never saw anything like that before. During this time i was researching osteoprosis and it kept coming back to celiac disase so I finally read about it, took a day to go gluten free and sure enough I was clear as a bell. So I did it 2 more days, and even with little sleep I felt 100 times better, I dont get that overwhelming fog exhaustion. It was not the meat being hard on my liver.

I know there is a test for celiac (I am scandanavian with blood type O) but in order to do it you start eating gluten again. I have children and its hereditary so i probably will do it. Since it is lifelong autoimmune It would explain my hypo diagnosis at 15, lifelong exhaustion, mood disorders, and of course my drinking was the worst thing I could have done. Once again, I have not been tested yet but this will be day 4 and last night I went out bowling after 4 hrs of sleep and working all day and last night I slept pretty good. I drink chammomile tea to calm any intestinal inflammation before I go to bed. I am still juicing a lot, even more now that I know my poor body was just starving for god knows how long. I am very concerened about my bones still, I will have to fight the doctor on that one. I really hope this is it and the war will be over and I can finally get my life back.

It has been so frsustrating having people tell you its "all in your head". I really have been down this road alone, and it completely destroyed my last realtionship. Today I am happy and energetic, and just a little optimistic :).

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hello and welcome to the Board.

If you have not been off gluten very long (say less than ten days - and it looks like about four) it is still possible to be tested and you have a reasonable chance of the test being valid. If it has been two weeks or more since eating gluten you will have to go back on it if you want a diagnosis (and it sounds like your doctor will need the diagnosis more than family and friends, to convince him to give you the testing you need - like the bone density scan.) If you can't get a positive test now then you can still stay on gluten and try again after you are nicely glutened up, which I know will be painful, but necessary if you want to attempt to prove it's not all in your head. If you have been back on gluten for a month, one more month should be long enough. Do you have a GP you can turn to for testing since your endo doesn't seem to be with the program at all??

The sad news is that many of us are non-celiac gluten intolerant which does not show up on the testing, but it is just as miserable as celiac disease, just not taken as seriously by those who do not have either :P I'm not sure why it is that when doctors don't know what the problem is they automatically assume you are a head case instead of realizing that they are ignorant. Too painful an admission, I guess ....

Good luck on whatever you decide to do and I hope you can get a positive test result. :)

Archived

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

Go to topic listing

  • 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
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.