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

Gluten withdrawal and adrenal fatigue


Kirsty40

Recommended Posts

Kirsty40 Apprentice

I hope it's ok that I post in this group. I do not have the celiac diagnosis, but am very gluten sensitive. My gastroenterologist is retesting for celiac, but that has been done before with biopt and blood test and then was negative. My symptoms from gluten sensitivity are extreme, burning itching. And sometimes, oversensitivity to sounds/movement and anxiety after eating gluten. Probably my nausea also.

My problem is, that because of coming of off psych meds with pre-existing adrenal fatigue, I get severe withdrawal when I go gluten free. Even when I taper. I get painfull feet, constant hunger, and since trying to come off gluten, I have bad hypoglycemia up to the point where I often have to eat every hour. The adrenal fatigue issues seem to get worse from trying to get off gluten. Especially the hunger and blood sugar regulation problems. I have about 1.5 slices of bread left to get off. But am afraid the adrenals will not recover from it. The damage from psych meds is this bad that I can't tolerate supplements like B12, magnesium, vitamin C. I know I have to come off, maybe slowly.

I would like to hear from you if you had something similar. Did you have severe withdrawal? Were you afraid your nervous system would not be able to handle that? How did it turn out?

 


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hello Kirsty, welcome to the forum! :)

Tapering off gluten does not work.  You have to just quit and never eat it again, if you are a celiac.  The celiac reaction is an autoimmune reaction.  The immune system doesn't recognize tapering off in either germs or gluten.  Instead it attacks full force any germs/gluten that it encounters in order to protect your body.  So tapering off is not any good or any use.   As long as you eat any gluten the immune system will continue to attack.  And it will not stop attacking for weeks or months after exposure to gluten.

Also, if you are being tested for celiac disease you need to keep eating gluten until all testing is completed.  The endoscopy requires 2 weeks of eating gluten and the blood antibodies require 12 weeks of eating gluten.

Withdrawal symptoms vary a lot.  Also, healing and recovery times vary a lot.  Generally though some improvement should be noticed in a month or 2.   Full recovery can take 18 months or more.

Jmg Mentor

Hi Kirsty and welcome :)

We have something in common:

22 hours ago, Kirsty40 said:

I do not have the celiac diagnosis, but am very gluten sensitive.

I also had anxiety issues although the gluten free diet has all but made them disappear :)

22 hours ago, Kirsty40 said:

The adrenal fatigue issues seem to get worse from trying to get off gluten. Especially the hunger and blood sugar regulation problems. I have about 1.5 slices of bread left to get off.

The bread is not good for hypoglycemia, gluten notwithstanding. It gets very rapidly converted into sugar by your body and that in turn drives your blood sugar into a spike, followed by a crash and the cycle continues. Have you come across theOpen Original Shared LinkIt's all about controlling blood sugar via eating. If you can switch to lower GI foods you will benefit from it.  

I also have hunger and blood sugar issues by the way. I tackle them via diet, making sure I'm eating a good volume of protein at each meal and trying to pick some low GI foods to reduce the blood sugar spike/crash cycle that fuels hypoclycemia. I don't always get there because I like sugary treats, but that's my object!

Anyway, hopefully once you fully remove any gluten sources from your diet you may find that your anxiety and other issues improve markedly. I spent many years on one anti depressant after another, but it was going gluten free that made the real difference. I hope you have the same experience and that you find this forum helpful.

Best of luck!

Archived

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

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

    • Total Members
      132,877
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.