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

Possible Hormone Imbalance

lil'chefy

By lil'chefy
in Related Issues & Disorders

Recommended Posts

lil'chefy Apprentice
lil'chefy
Posted

Some of you may have read some of my prior posts under different topics. Not sure where to start...I was diagnosed with DH, via skin biopsy @ 13 yrs. old. Until recently, I have been on 100mg. of Dapsone everyday since then. I am now 36 and haven't been taking Dapsone for a little over a year (only gluten free since late November 2011). At first not taking Dapsone I thought my disease must be a misdiagnosis or in possible remission, that's when I discovered this forum. Previously I didn't realize that the gluten could be working on my insides silently. Over my lifetime I have been given the diagnosis of ADD, having the markers for lupus, a few bouts of Ebstein Barr, profound nasal allergies, Renaud's syndrome, and have always fought my weight. When I was a little girl I would just get nose bleeds that were so bad (every day) my Mom would eventually just tell me to hang my head over the toilet and let it drip. This is going to be a long post, there is no other way for all of you to get an accurate pic of my life unless I tell you a lot of information. I was never anemic, but always on the brink (numbers were low). I have always been hypoglycemic. When I was a young adult I got profound stomach pains. If I was driving I would have to pull over the pain was so bad. Over the course of my life the stomach pain has come and gone. I had previously attemted and failed the Gluten-Free lifestyle several times. I had no education about the diet and my Dr.s at the time didn't think it was possible to live gluten free and so subsequently didn't give me a clear idea of what a gluten free diet was (not sure we could have done it anyway; my parents were on welfare at the time of my diagnosis)nor did they tell me all the other factors involved in my health. I don't know if it was the Dapsone or gluten, but when I started taking Dapsone, I went from being an A-B student to barely getting by. In hind sight its frustrating that my Mom didn't realize the correlation! Anyhow, fast forward.....

I became pregnant with my daughter when I was 29 years old. My OB took me off of Dapsone and I attempted to be gluten free (though I am sure that I wasn't). My baby was not growing properly inside of me. I was gaining weight as scheduled, but my baby wasn't getting the nutrients that she needed. I was put on bed rest and a high fat high protein diet. She still wasn't growing as she should have been, not until the very end of my eighth month. I had previously lost 100 lbs., and so my OB thought for some reason that my body was feeding its own fat cells and not my baby. My baby was borm weighing a blessed 6 lbs. She has severe vascular problems, is almost clinically blind, had a strawberry hemangioma that blocked her airway, and is PROFOUNDLY intolerant of milk products (it makes her vomit). I should also mention that I was unable to nurse my daughter. I was not producing adequate milk supply no matter what I did.

I got pregnant with my son at 32. By all accounts I had a normal healthy pregnancy. My OB this time had me continue to to take 100 mg. of Dapsone while I was pregnant. My baby grew as scheduled inside of me but I started having a lot of vascular trouble. He was born a normal weight with little complications. Again, I wasn't able to nurse my son. I had no milk supply :( After I delivered him I learned of this forum and have become an investigator ever since!

After I had him, I have never been able to lose that last 10 lbs. I tried running 3 miles a day on only 1000 calories a day, for like 6 months. I couldn't lose. I went on Adipex, a weight loss drug; I couldn't lose. I was still eating wheat! I started getting these crazy random fevers of 102. No other symptoms. I was diagnosed with lupus markers, but no lupus. The Dr. never figured out what was wrong, but symptoms went away. I started having dire stomach pain again (but this time with this WEIRD SLOSHING inside my gut) still have it. I had an endoscopy. No sign of celiac (6 sites were biopsied). I had a blood test, no celiac disease was found, though I always have elevated A&A. I know I have celiac, as I have had three confirmed skin biopsies. I went gluten free for good and took myself off of Dapsone. As soon as I did, that the fevers went away, and I could stop taking meds for ADHD, but now I think my hormones are really bottoming out. I have been having 10 day cycles, mood swings across the board, I was having extreme tiredness, 1 swollen eye, extreme uncontrollable coldness, terrible foot stiffness/ pain, and have been totally unable to lose the weight (10 lbs.) no matter what I do! Could my hormones and all these changes in my body be the years of gluten, or am I trying to pin it all on gluten? Now I am having hot flashes! At 36! I am soooooooo frustrated. I just want to be a normal person!

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

Celiac.com Sponsor (A8-M):


nmull #newly diagnosed Newbie
nmull #newly diagnosed
Posted

Hey, im sorry to hear about all your troubles :) I have had all of the same exact symptoms. I have been gluten free since February this year. When I accidentally ingest gluten, I get a rash, depression, stomach pains,migraines, mood swings and so tired I can't get out of bed. I need to add that I am also on thyroid meds for Hypothyroidism. We are the same age and I am night sweats too. Have you ever had your thyroid checked? Also, have you did a cleansing diet? ie. paleo

cavernio Enthusiast
cavernio
Posted

I was missing periods and had like 40 day cycles, a couple months gluten and dairy free and they're 28 days.

lil'chefy Apprentice
lil'chefy
Posted
  • Author

I was missing periods and had like 40 day cycles, a couple months gluten and dairy free and they're 28 days.

I guess I am wondering, my cycles have been 10 days, right now they are actually normal, but the hot flashes are freaking me out. Are these signs of early menepause? I just got an ultra sound of my thyroid. I passed out a couple times with my kids while we were alone! I haven't gotten the results back yet from ultrasound, but I am not cold anymore. Now I am hot!I really feel like I am going nuts. The swollen eye thing is the weirdest. I have been dairy/ gluten free for at least 8-9 months. How long will it take to clear out my system? I am getting ready to have a saliva test for my hormones in a few days. My thyroid numbers come back on the low side of normal, but when I started getting the hot flashes is the same day I got my thyroid blood panel done. Can thyroid fluctuate from hypo and back and forth?

nmull #newly diagnosed Newbie
nmull #newly diagnosed
Posted

My thyroid fluctuates up and down. The doctor took me off my hormones for 6mths and then I had to be put back on Synthroid. Fluctuating could be Hashimotos or at least thats what my Doctor tested me for.

These hormones and Celiac can make you feel so crazy! I am so thankful for this forum because I don't feel so alone reading others post :)

eatmeat4good Enthusiast
eatmeat4good
Posted

I guess I am wondering, my cycles have been 10 days, right now they are actually normal, but the hot flashes are freaking me out. Are these signs of early menepause? I just got an ultra sound of my thyroid. I passed out a couple times with my kids while we were alone! I haven't gotten the results back yet from ultrasound, but I am not cold anymore. Now I am hot!I really feel like I am going nuts. The swollen eye thing is the weirdest. I have been dairy/ gluten free for at least 8-9 months. How long will it take to clear out my system? I am getting ready to have a saliva test for my hormones in a few days. My thyroid numbers come back on the low side of normal, but when I started getting the hot flashes is the same day I got my thyroid blood panel done. Can thyroid fluctuate from hypo and back and forth?

You should ask for the thyroid to be tested for Hashimoto's and Graves antibodies. With Hashimoto's it is common for the thyroid to go from hypo to hyper until it burns itself out so to speak and stops working. The feeling cold all the time and inability to lose weight would be consistent with Hashimoto's too. Hashimoto's is common in Celiacs.

For those with DH, the intestinal biopsy is most often negative, just as yours was, but nevertheless, since you have a diagnosis of DH, you are Celiac. It's just that the antibodies are in the skin.

You may have other intolerances. Soy causes my face and ankles to swell, especially the eyelids. I'm Still finding out after 2 years of being gluten free what I am intolerant of. I have DH and Hashimoto's, but I also have other food intolerances. You may too.

I hope you can get the antibody tests for Hashi's and Graves to be sure your thyroid is functioning properly.

Is your DH under control now?

I'm so sorry you weren't told how seriously people with DH have to be about being gluten free. It makes all the difference in the world.

So glad you found this site and started doing your own investigating. Sounds like you have come a long way!

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. xxnonamexx
      - 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

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

      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...
    4. 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...
    5. 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...
  • 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

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

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      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
      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:    
×
×
  • 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.