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

Exhaustion

BeautifulDay

Recommended Posts

BeautifulDay Apprentice
BeautifulDay
Posted

So I went gluten-free about a month ago after years of struggling with my health and multiple misdiagnoses. My symptoms included mostly GI prolems, abodominal pain, soreness, random hives, anemia, fatigue, etc. About a year ago I was diagnosed with 20-30 different food allergies via skin testing. I have been avoiding all this food since I was diagnosed, but my health has not gotten markedley better.

I have been tested for Celiac Disease multiple times (both by blood and intestinal biopsy via an upper endoscopy) and each time the results were negative. After doing some research and reading that many people have Non-Celiac-Gluten-Intolerance and, while testing negative for Celiac, still cannot tolerate the protein. I decided after all my struggle and pain and ridding of essential foods in the past for my allergies, getting rid of wheat/gluten would be a fairly easy step.

After going gluten-free, I have never felt better! (And not to mention I had my first "normal" BM in YEARS!!)

Although things are better, they still are not great. I have been struggling with exhaustion and fatigue since I went gluten-free. I eat plenty of protein for a woman my age along with a great deal of fiber via fruit and vegetables. Is this fatigue a possible side-effect of going gluten-free (withdrawl?)

Has anyone else had this problem?? Does it get better?

Thanks for reading and any help or suggestions you might have!! I really appreciate it! :)

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

Celiac.com Sponsor (A8-M):


MKat Explorer
MKat
Posted
So I went gluten-free about a month ago after years of struggling with my health and multiple misdiagnoses. My symptoms included mostly GI prolems, abodominal pain, soreness, random hives, anemia, fatigue, etc. About a year ago I was diagnosed with 20-30 different food allergies via skin testing. I have been avoiding all this food since I was diagnosed, but my health has not gotten markedley better.

I have been tested for Celiac Disease multiple times (both by blood and intestinal biopsy via an upper endoscopy) and each time the results were negative. After doing some research and reading that many people have Non-Celiac-Gluten-Intolerance and, while testing negative for Celiac, still cannot tolerate the protein. I decided after all my struggle and pain and ridding of essential foods in the past for my allergies, getting rid of wheat/gluten would be a fairly easy step.

After going gluten-free, I have never felt better! (And not to mention I had my first "normal" BM in YEARS!!)

Although things are better, they still are not great. I have been struggling with exhaustion and fatigue since I went gluten-free. I eat plenty of protein for a woman my age along with a great deal of fiber via fruit and vegetables. Is this fatigue a possible side-effect of going gluten-free (withdrawl?)

Has anyone else had this problem?? Does it get better?

Thanks for reading and any help or suggestions you might have!! I really appreciate it! :)

Yes!! I'm still waiting on biopsy reports. My blood tests have always come back negative. I was mostly gluten free for 3 weeks and my stomach has never felt better!!! My one complaint was the fatigue. I didn't know if it was because I wasn't getting my normal carbs....I also really cut back on the sugar so I wondered if I was going thru sugar withdrawal symptoms??? BUT, I think that was the time that my thryoid really began to go crazy (have had thryoid issues for 12 yrs). It took me a couple of months to get that better (it kept flip flopping). So, my suggestion would be to have your thyroid checked. But, I did wonder if the fact that I wasn't eating gluten caused my thyroid to go weird....makes sense if eating gluten can cause your thryoid problems then NOT eating gluten would cause it to change as well???? So many mysteries :)

Roda Rising Star
Roda
Posted

Getting the thyroid checked is a good idea. You need them to run a TSH, T3, T4, free T3, free T4, and tests for thyroid antibodies. Also you need to get checked for other deficiencies, like iron, b12, folic acid, vitamin d, vitamin K, etc. I felt better going gluten free but really felt great once I started supplementing with vitamin D. My levels were really low. I am still struggling with iron deficiency and I think I need to start taking vitamin b12. Hang in there.

lizard00 Enthusiast
lizard00
Posted

I had terrible fatigue, also. It got progressively worse over about a year and a half. I had my thyroid checked a couple of times, and it always came back normal. After about 6 months, I started to realize that I wasn't dragging like I had been, and no longer was taking naps in the afternoon.

It doesn't happen over night either way, although I wish the healing part did! :lol: I would also advise getting an overall check for any deficiencies... I was low in vitamin D, which in common among the general population, throw celiac on top of that and your almost guaranteed to be low. Anyway, I started taking a supplement and noticed a huge difference within the first week.

All that to say, YES! There is hope!! :)

strawberrynin Newbie
strawberrynin
Posted

You'd mentioned anemia. Anemia takes some time to fix on gluten-free diet. And the gluten-free diet may not make a difference in your anemia. I've been told because I'm cutting out easy energy, and the iron still isn't getting absorbed, I'm going to be tired. And, depending on your particular ferritin levels, you may require other interventions (shots, pills, transfusions) until your intestines are repaired.

samanthaw Newbie
samanthaw
Posted
So I went gluten-free about a month ago after years of struggling with my health and multiple misdiagnoses. My symptoms included mostly GI prolems, abodominal pain, soreness, random hives, anemia, fatigue, etc. About a year ago I was diagnosed with 20-30 different food allergies via skin testing. I have been avoiding all this food since I was diagnosed, but my health has not gotten markedley better.

I have been tested for Celiac Disease multiple times (both by blood and intestinal biopsy via an upper endoscopy) and each time the results were negative. After doing some research and reading that many people have Non-Celiac-Gluten-Intolerance and, while testing negative for Celiac, still cannot tolerate the protein. I decided after all my struggle and pain and ridding of essential foods in the past for my allergies, getting rid of wheat/gluten would be a fairly easy step.

After going gluten-free, I have never felt better! (And not to mention I had my first "normal" BM in YEARS!!)

Although things are better, they still are not great. I have been struggling with exhaustion and fatigue since I went gluten-free. I eat plenty of protein for a woman my age along with a great deal of fiber via fruit and vegetables. Is this fatigue a possible side-effect of going gluten-free (withdrawl?)

Has anyone else had this problem?? Does it get better?

Thanks for reading and any help or suggestions you might have!! I really appreciate it! :)

Have you resolved the anemia? If not, it's important for your iron levels to be sufficient or you will never feel completely well, even if the gluten problem is resolved. Discuss iron supplementation with your doctor. You may also need to supplement other vitamins -- B12, D, C. Also, make sure there are no hidden sources of gluten in your diet, especially fast foods and processed foods, vitamins, drinks, etc. The web has endless sources for checking to see if a product contains gluten. Some people go as far at to check hair products, toothpaste -- anything that is in contact with the body. Good luck!

Karrin Rookie
Karrin
Posted
Yes!! I'm still waiting on biopsy reports. My blood tests have always come back negative. I was mostly gluten free for 3 weeks and my stomach has never felt better!!! My one complaint was the fatigue. I didn't know if it was because I wasn't getting my normal carbs....I also really cut back on the sugar so I wondered if I was going thru sugar withdrawal symptoms??? BUT, I think that was the time that my thryoid really began to go crazy (have had thryoid issues for 12 yrs). It took me a couple of months to get that better (it kept flip flopping). So, my suggestion would be to have your thyroid checked. But, I did wonder if the fact that I wasn't eating gluten caused my thyroid to go weird....makes sense if eating gluten can cause your thryoid problems then NOT eating gluten would cause it to change as well???? So many mysteries :)

I'm having the same trouble, but in the past I've had my thyroid tested and it's always been reported back to me as being normal. I'm curious if you ever had yours tested prior to your celiac diagnosis and had a normal result?

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

Celiac.com Sponsor (A8-M):


BeautifulDay Apprentice
BeautifulDay
Posted
  • Author
I'm having the same trouble, but in the past I've had my thyroid tested and it's always been reported back to me as being normal. I'm curious if you ever had yours tested prior to your celiac diagnosis and had a normal result?

I have had mine tested a couple times in the past and have had normal results. However, thyroid problems run rampant in my family (my mom has Grave's disease) so it's likely I have developed a thyroid problem as well...

Even if you have tested normal in the past, you can still develop thyroid problems, so I definitely say get tested again! I have a blood test scheduled for this next week, so hopefully that will give me some answers. It's better safe than sorry in getting it checked out for yourself as well!!

Good luck!! :)

Karrin Rookie
Karrin
Posted
I have had mine tested a couple times in the past and have had normal results. However, thyroid problems run rampant in my family (my mom has Grave's disease) so it's likely I have developed a thyroid problem as well...

Even if you have tested normal in the past, you can still develop thyroid problems, so I definitely say get tested again! I have a blood test scheduled for this next week, so hopefully that will give me some answers. It's better safe than sorry in getting it checked out for yourself as well!!

Good luck!! :)

Thanks! I'll keep it in mind for next time I see my doctor. :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,678
    • Most Online (within 30 mins)
      7,748
    Kristina S
    Newest Member
    Kristina S
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.