Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Menses & Gluten Intolerance/allergy


Desy

Recommended Posts

Desy Rookie

Hi there, everyone, I'm a n00b here. Not sure if I have a gluten allergy (I cannot afford the test at present), but I sure am convinced....I have a lot of typical symptoms.

Anyway, how many females out there have problems with their periods coinciding with their gluten allergy/intolerance symptoms? This past one has been pure HELL for me. Horribly painful cramps, terrible backache, emotional roller coaster, very heavy flow, etc. And I was four days late -- this never happens.

I have read several other posts about gluten allergies & really bad PMS.....does anyone know or can anyone explain the supposed connection b/w gluten allergy & hormone problems?

Thanks.


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Welcome to the group!

I suffered from very heavy, crampy periods for years :( It's possible that gluten is making the situation worse, but there are other things (like endometriosis) that can cause those symptoms too.

Incidentally, I recently found out that the uterus has a pretty high concentration of mast cells, which are involved not only in allergic reactions but in menstruation and orgasm. Celiac disease is not an allergy (it's an autoimmune disorder), but if you do have a true allergy it's possible that the mast cells in your uterus are being triggered more than normal... causing pain and heavy flow.

You really should consider getting a celiac panel (blood test) before experimenting with a gluten-free diet. If it helps... and you don't want to go back to eating gluten... you might really regret not knowing for sure if you have celiac disease. It makes a difference in how strict you need to be.

Desy Rookie

Hi, thanks for your reply.

Although I knew that celiac disease is an autoimmune disorder, I didn't know about the mast cells being in the uterus. I don't have endometriosis. I'd really love to get the test, but I cannot afford it right now. I have been so sick that I have not been able to work in almost a year. Money is very tight. :( Believe me, I would if I could. I'm currently seeing a naturopath b/c my health has been so bad. That is extremely expensive, but it's finally giving me some answers after literally decades of being sick, & conventional Western medicine not helping me.

My other symptoms are:

EXTREME lethargy

insomnia

bloating

acne

gas

constipation

weight gain

depression

brain fog

anemia

DH

chronic idopathic urticaria (two outbreaks only)

stomach upset

chronic fatigue

That's all I can remember @ the moment.

strawberrynin Newbie
Hi, thanks for your reply.

I don't have endometriosis.

Have you had a laparoscopic procedure to rule this out? I have had multiple procedures to remove endometriosis. It is not detectable on any scan or test. It has to be visualized. With the gas and bloating - my endometriosis has a habit of wrapping around my colon causing trapped, painful gas, bloating and issues with bowel movements. I wouldn't suggest ruling that out completely.

Mother of Jibril Enthusiast
bloating

constipation

weight gain

depression

brain fog

chronic idopathic urticaria (two outbreaks only)

chronic fatigue

These symptoms are also associated with Hashimoto's disease (autoimmune hypothyroidism). Have you ever had your TSH checked? Without insurance it would cost about $50.

I understand being frustrated with conventional doctors... I've had some very BAD experiences...but I'm not sure a naturopath will be able to help you if your thyroid is destroyed. The only solution is to take replacement thyroid hormones (which are not available as an OTC supplement).

Desy Rookie
Have you had a laparoscopic procedure to rule this out? I have had multiple procedures to remove endometriosis. It is not detectable on any scan or test. It has to be visualized. With the gas and bloating - my endometriosis has a habit of wrapping around my colon causing trapped, painful gas, bloating and issues with bowel movements. I wouldn't suggest ruling that out completely.

No I haven't. Guess I need to change my dr. because she told me that I don't have endometriosis (after examining me during my physicals).

I don't see her anymore anyway. I've had it with conventional medicine. I go to a naturopath now.

Desy Rookie
These symptoms are also associated with Hashimoto's disease (autoimmune hypothyroidism). Have you ever had your TSH checked? Without insurance it would cost about $50.

I understand being frustrated with conventional doctors... I've had some very BAD experiences...but I'm not sure a naturopath will be able to help you if your thyroid is destroyed. The only solution is to take replacement thyroid hormones (which are not available as an OTC supplement).

Yes. I just got a whole blood hormone panel done. Turns out my thyroid is normal. But this was at a conventional medical lab. They "lost" one my first blood samples, however. Long story, but since I had two bunches of samples done that same day & sent together, I don't fully trust them.

Apparently, you can help your thyroid by consuming many root vegetables, using a rebounder, doing yoga, and other things........they say that this includes hypothyroidism.

I have to say, although some gluten intolerance/allergy symptoms sound very similar to hypothyroidism, I wish I had the money to get both tests done......(including the thyroid tests for a SECOND time).


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast
Yes. I just got a whole blood hormone panel done. Turns out my thyroid is normal. But this was at a conventional medical lab. They "lost" one my first blood samples, however. Long story, but since I had two bunches of samples done that same day & sent together, I don't fully trust them.

Apparently, you can help your thyroid by consuming many root vegetables, using a rebounder, doing yoga, and other things........they say that this includes hypothyroidism.

I have to say, although some gluten intolerance/allergy symptoms sound very similar to hypothyroidism, I wish I had the money to get both tests done......(including the thyroid tests for a SECOND time).

If your thyroid levels are normal that's great! If you ever have another bout of chronic urticaria you might want to get yourself retested... Hashimoto's is very common in people with that disorder.

I have read that some people are able to kickstart a "sluggish" thyroid by taking supplements, changing their diet etc... it's like reversing type II diabetes. The problem with Hashimoto's disease is that it's like type I diabetes. Once the gland is destroyed you become dependent on replacement hormones.

Maybe you already knew this ;) ... just wanted to get the information out there for anyone else who might be reading this thread.

Desy Rookie
If your thyroid levels are normal that's great! If you ever have another bout of chronic urticaria you might want to get yourself retested... Hashimoto's is very common in people with that disorder.

I have read that some people are able to kickstart a "sluggish" thyroid by taking supplements, changing their diet etc... it's like reversing type II diabetes. The problem with Hashimoto's disease is that it's like type I diabetes. Once the gland is destroyed you become dependent on replacement hormones.

Maybe you already knew this ;) ... just wanted to get the information out there for anyone else who might be reading this thread.

Hi; thanks for this. I didn't know that re: Hashimoto's & chronic idiopathic urticaria. Do you have any more info on this?

Oh great. My mom had Hashimoto's & had to get her left thyroid surgically removed. And now she's been on synthyroid for years & years. So now I can see myself having it. :(

Sorry to be such a downer. I'm just extremely, extremely frustrated right now. I have literally been sick for over 19 years now. And forced to be on meds for most of this time, too (against my will, although I'll never go back on them...ever!). All they did was give me horrible side effects.

When you don't have your health, it. is. absolute. HELL.

Mother of Jibril Enthusiast

Here's an abstract about the link between CU and Hashimoto's:

Open Original Shared Link

I totally agree with you... chronic illness SUCKS. Autoimmune disorders are hard to diagnose, hard to treat, and impossible to cure... which can leave you feeling like you're either a piggybank for the drug companies or a complete nut job :angry: You have to be really proactive even when you don't feel like getting out of bed in the morning.

Back to your original question... gluten intolerance is a common problem in people with thyroid disorders, so if that runs in your family (it does in mine)... a gluten-free diet is definitely something to consider.

Desy Rookie
Here's an abstract about the link between CU and Hashimoto's:

Open Original Shared Link

I totally agree with you... chronic illness SUCKS. Autoimmune disorders are hard to diagnose, hard to treat, and impossible to cure... which can leave you feeling like you're either a piggybank for the drug companies or a complete nut job :angry: You have to be really proactive even when you don't feel like getting out of bed in the morning.

Back to your original question... gluten intolerance is a common problem in people with thyroid disorders, so if that runs in your family (it does in mine)... a gluten-free diet is definitely something to consider.

Thanks for the info. Yup, I should probably be a billionaire right now -- I should have had stocks in the drug companies).....I was a VIP member.

Going on the gluten diet.

samcarter Contributor

I have noticed my periods are worse when I've been eating dairy. If I am strict and eat no dairy for at least two weeks prior to my period (and I mean NO dairy, no casein or lactose), my periods are practically cramp-free and I have much less lethargy and PMS. However, dairy turns me into the Wicked Witch of the North. Yikes.

keacre Newbie
Hi, thanks for your reply.

Although I knew that celiac disease is an autoimmune disorder, I didn't know about the mast cells being in the uterus. I don't have endometriosis. I'd really love to get the test, but I cannot afford it right now. I have been so sick that I have not been able to work in almost a year. Money is very tight. :( Believe me, I would if I could. I'm currently seeing a naturopath b/c my health has been so bad. That is extremely expensive, but it's finally giving me some answers after literally decades of being sick, & conventional Western medicine not helping me.

My other symptoms are:

EXTREME lethargy

insomnia

bloating

acne

gas

constipation

weight gain

depression

brain fog

anemia

DH

chronic idopathic urticaria (two outbreaks only)

stomach upset

chronic fatigue

That's all I can remember @ the moment.

I have the same problems during that time of the month. Horrible cramps, very heavy flow, emotional roller coaster. I have gone on and off gluten for a year now, but this last month I have hardly any gluten and this last period was so much easier. Cramps only 1 day for a few hours and light and shorter flow. I would totally try eating gluten free for a week or two at least and see how you feel. The brain fog will go away, acne will get better, and your stomach will flatten. Almost all the symptoms went away for me. I also increase my vitamin B's and Calcium which is also supposed to help. I have also not been able to afford the test and since I haven't been eating gluten it will mostly come back negative anyway. Try it, you will be amazed how good you feel. Just being able to think clearly is worth it.

Desy Rookie
I have noticed my periods are worse when I've been eating dairy. If I am strict and eat no dairy for at least two weeks prior to my period (and I mean NO dairy, no casein or lactose), my periods are practically cramp-free and I have much less lethargy and PMS. However, dairy turns me into the Wicked Witch of the North. Yikes.

I have also noticed that my cramps are much worse with dairy. I only eat organic yogurt now (& the odd piece of cheese). I did eat some cheese (that I remember) during my period....but no yogurt. (???)

I wonder if it's all the hormones & steroids they give the cows that is affecting us when we eat dairy? That is very scary.

Desy Rookie
I have the same problems during that time of the month. Horrible cramps, very heavy flow, emotional roller coaster. I have gone on and off gluten for a year now, but this last month I have hardly any gluten and this last period was so much easier. Cramps only 1 day for a few hours and light and shorter flow. I would totally try eating gluten free for a week or two at least and see how you feel. The brain fog will go away, acne will get better, and your stomach will flatten. Almost all the symptoms went away for me. I also increase my vitamin B's and Calcium which is also supposed to help. I have also not been able to afford the test and since I haven't been eating gluten it will mostly come back negative anyway. Try it, you will be amazed how good you feel. Just being able to think clearly is worth it.

Yep. I'm attempting the gluten free diet now. It's brutally hard. I finished my cycle on Monday though, but still have brutal PMS cramps! And awful back cramps today too. I'm soooooooooo frustrated.

How long do you have to be gluten-free to notice a decrease in your symptoms? 1-2 weeks? Ugh, I'll do anything to have that. My fatigue is unreal.....sometimes I cannot even use the remote control for more than like 5 seconds without my hand & arm getting tired. Or I get exhausted just shampooing my hair while showering. What is that. That's ridiculous. This is NOT living. This is NOT normal.

Thanks for your post btw.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,833
    • Most Online (within 30 mins)
      7,748

    Lucy20
    Newest Member
    Lucy20
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Manaan2
      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
    • Scott Adams
      I had this symptom when I was diagnosed. Are you sure that your diet is 100% gluten-free?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):      
×
×
  • Create New...