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

Suspecting Gluten Sens./ Weight Gain Etc


tammyinwv

Recommended Posts

tammyinwv Rookie

      I went vegetarian in january, then Vegan in February. Mostly for health reasons. I also have done bouts of 100% juicing. When I juiced I would lose up to 3 lbs daily. Then when I even added in just one plant based meal I would start gaining back. I have been struggling to figure out whats going on. I then eliminated nuts and almost all oil and sugar. Lost for 2 days then started gaining gain. For the last two months I have gained and lost the same 5 lbs over and over. After a comment by a friend I started reading about gluten sensitivity. a lot of the symptoms sound very familiar but then again could go along with a lot of things.  Here are some of the things I have noticed: 

1. weight gain

2. chicken skin like texture to back of arms

3. bloating after some meals with discomfort but not real pain

4. excessive Hair loss including eye lashes.

5. fatigue

4 days ago I started trying to eliminate gluten. However I didnt realize one had to be so obsessive until I read book by elizabeth Hasselbeck. But I lost some those first two days, stayed the same on the third, and ate at Olive garden last night and since I hadnt read elizabeth's book I had ordered Minestrone soup not realizing it had macaroni. so I just picked it out. Now I know better. But when I weighed myself this morning I had gained 1.5 lbs back over night. I also researched my mascara this morning and see it has gluten. I have struggled with eyelash loss for yrs.

Tammy


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I went vegetarian in january, then Vegan in February. Mostly for health reasons. I also have done bouts of 100% juicing. When I juiced I would lose up to 3 lbs daily. Then when I even added in just one plant based meal I would start gaining back. I have been struggling to figure out whats going on. I then eliminated nuts and almost all oil and sugar. Lost for 2 days then started gaining gain. For the last two months I have gained and lost the same 5 lbs over and over. After a comment by a friend I started reading about gluten sensitivity. a lot of the symptoms sound very familiar but then again could go along with a lot of things.  Here are some of the things I have noticed: 

1. weight gain

2. chicken skin like texture to back of arms

3. bloating after some meals with discomfort but not real pain

4. excessive Hair loss including eye lashes.

5. fatigue

4 days ago I started trying to eliminate gluten. However I didnt realize one had to be so obsessive until I read book by elizabeth Hasselbeck. But I lost some those first two days, stayed the same on the third, and ate at Olive garden last night and since I hadnt read elizabeth's book I had ordered Minestrone soup not realizing it had macaroni. so I just picked it out. Now I know better. But when I weighed myself this morning I had gained 1.5 lbs back over night. I also researched my mascara this morning and see it has gluten. I have struggled with eyelash loss for yrs.

Tammy

The gluten free diet isn't about weight loss. A couple of pounds difference in weight every day is normal. If you are severely limiting your calories, you might not be getting the vitamins you need and that can lead to hair loss and fatigue.

kareng Grand Master

Open Original Shared Link

"....Daily water fluctuations, which are more common in women because of hormonal changes throughout the month, are one of the main reasons that I tell my patients not to weigh themselves every day, ...."

tammyinwv Rookie

Open Original Shared Link

"....Daily water fluctuations, which are more common in women because of hormonal changes throughout the month, are one of the main reasons that I tell my patients not to weigh themselves every day, ...."

I have been having hair loss for several yrs. Sometimes worse than others. I have only recently been changing my eating habits but I am very careful about getting a variety of greens and other fruits and veggies especially when juicing. One doesnt have to have dairy and meat for a well balanced diet.  as for the weight gain. I went a whole week while on vacation not jucing, but eating a healthy vegan diet. I am not a big eater and tend to graze at times. But during that week I gained 8 lbs. The only thing I can see different from when I juice and when I allow a meal was that I could possibly be getting gluten. I know my weight varies from day to day, but should not continue to go up without balancing out unless something is going on.

GF Lover Rising Star

Have you considered having your thyroid function checked?

tammyinwv Rookie

Have you considered having your thyroid function checked?

Thyroid has been checked a couple of times. once normal, the other borderline normal for hypothyroid.

kareng Grand Master

Well... If you have Celiac disease, you should consider getting tested for it. Then that question would be answered. Most, maybe not all, but most, people with Celiac disease will gain weight once they have started healing and are now able to absorb nutrition.


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



Celiac.com Sponsor (A8-M):



Hobbes Rookie

I definitely gained weight due to getting sick. Even now, when I get glutened I get bloated and puffy. So it could be a problem for you. I would encourage you to get tested before going 100% gluten free. I wish I had done that.

tammyinwv Rookie

I definitely gained weight due to getting sick. Even now, when I get glutened I get bloated and puffy. So it could be a problem for you. I would encourage you to get tested before going 100% gluten free. I wish I had done that.

I had thought about waiting the month till my next appointment until I read you had to be on gluten for 12 weeks before testing. I have been trying to be gluten free for about 4 days. But I know there have been a couple of mistakes. Can I still test?

Hobbes Rookie

I had thought about waiting the month till my next appointment until I read you had to be on gluten for 12 weeks before testing. I have been trying to be gluten free for about 4 days. But I know there have been a couple of mistakes. Can I still test?

 

If I understand your situation correctly, you have been just a regular gluten-eating person for a long time, and have recently eaten somewhat gluten-free for 4 days. If this is the situation, then yes, you can still test. It's highly unlikely that your villi have healed in the 4 days of somewhat gluten-free eating period. Until you get the test, keep eating gluten.

jaggirl47 Explorer

Look at having your vitamin D, calcium, and parathyroid hormone checked. Hair loss is a big symptom of parathyroid disease

nvsmom Community Regular

You should be fine to be tested after only 4 days gluten-free.  It usually takes weeks, and sometimes months, for autoantibody levels to drop to normal.  If it worries you, just wait a couple of weeks and eat 1-2 slices of bread daily.

 

I agree that you should get your thyroid checked, but get it checked thoroughly.  I have Hashimoto's, but I tested as TSH high normal to subclinically barely high for decades.  When they finally admitted I have a thyroid problem, my TSH was high but not crazy high (14 I think) yet my thyroid was almost non-functioning.  Get the actual hormones tested to make sure you are okay.

 

For thyroid get:

  • TSH - should be near a 1 (for some, a 2 is too high)
  • free T4 and free T3 - should be in the 50-75% range of your labs normal reference range (especially the FT3) - do not get total T4, total T3, T3, or T4 as they do not as accurately reflect the hormone levels your body uses
  • TPO Ab - should be low

For celiac disease get:

  • tTG IgA and tTG IgG (tissue transglutaminase)
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysial antibodies)
  • total serum IgA - control test
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests
  • endoscopic biopsy - 6+ samples taken

 

Good luck!

tammyinwv Rookie

Look at having your vitamin D, calcium, and parathyroid hormone checked. Hair loss is a big symptom of parathyroid disease

Thanks. I go Thursday of next week to my GP and making a list of labs i will ask him to do. 

Tammy

tammyinwv Rookie

You should be fine to be tested after only 4 days gluten-free.  It usually takes weeks, and sometimes months, for autoantibody levels to drop to normal.  If it worries you, just wait a couple of weeks and eat 1-2 slices of bread daily.

 

I agree that you should get your thyroid checked, but get it checked thoroughly.  I have Hashimoto's, but I tested as TSH high normal to subclinically barely high for decades.  When they finally admitted I have a thyroid problem, my TSH was high but not crazy high (14 I think) yet my thyroid was almost non-functioning.  Get the actual hormones tested to make sure you are okay.

 

For thyroid get:

  • TSH - should be near a 1 (for some, a 2 is too high)
  • free T4 and free T3 - should be in the 50-75% range of your labs normal reference range (especially the FT3) - do not get total T4, total T3, T3, or T4 as they do not as accurately reflect the hormone levels your body uses
  • TPO Ab - should be low

For celiac disease get:

  • tTG IgA and tTG IgG (tissue transglutaminase)
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysial antibodies)
  • total serum IgA - control test
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests
  • endoscopic biopsy - 6+ samples taken

 

Good luck!

Thanks for the specific lists of test needed. I go Thursday of next week to GP. I have had fibromyalgia since 98, and just tried of feeling tired.

Tammy

nvsmom Community Regular

 I have had fibromyalgia since 98, and just tired of feeling tired.

 

Understandable.  :(  Good luck!

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - 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

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

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

    • Total Members
      133,193
    • Most Online (within 30 mins)
      7,748

    Loiswxm333
    Newest Member
    Loiswxm333
    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

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      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
      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
      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:    
×
×
  • 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.