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

For The Older Ladies W/o Gold Seal Dx


AVR1962

Recommended Posts

AVR1962 Collaborator

Like many of the ladies here, I do not have the "gold seal" diagnosis. I was given a "careful" dx based on tests results, improvement on gluten-free diet and symptoms. However, one of my docs disagrees with the dx. I am not going off the gluten-free diet regardless and because of past history I see alot of links throughout my life to indicate celiac.

My research this weekend lead me to something else, menopause

Open Original Shared Link

Of the 34 symptoms, I have all but 8.....things that I was connecting to the celiac, and now I am question things.

This debate actually started a year ago as this is what my GP thought it was, went to GYN and she said my symptoms were stress, not menopause. She had me go off the Pill and my hormones were tested and given a clean bill of health. I have 2 GP and both keep telling me they feel I am experiencing menopausal symptoms. I have not given it much thought as I do not have the first 6 on the list which are the classic symptoms. Could it me the hormones from the Pill are a bit more stabilzed and that's why I do not have the classic symtoms but have the rest?

Just wondering if this rings a bell with anyone else? I do have an appt with GP doc tomorrow and GYN doc next week, hoping to get some answers.


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



Celiac.com Sponsor (A8-M):



curlyfries Contributor

Wow.....looks like most of the women (and men) here must be going through menopause! :unsure:

Let's just take everything a woman could possibly complain about and call it menopause. :rolleyes:

And you've had no changes in your cycle?

What kind of test did you have? If you had a positive blood test then you're celiac. Add to that the fact that you have improved on a gluten free diet. Doctor's are so good at making us feel like we don't know what we're talking about. Go with your gut ;) .....and the proof and don't let doctors tell you differently. Trying to label it menopause, to me, is almost as bad as "It's all in your head."

UKGail Rookie

My periods stopped at age 44, after I had been feeling unwell for some months, with, including other things, hot flushes and low sex drive. A gyn doc diagnosed ovarian cysts and gave me a short course of hormone for them. The cysts resolved, my periods restarted, and the hot flushes died away. At the time I was had started eating a low gluten diet, and a GI biopsy came back negative.

Fast forward another 1-2 years of eating a lot of gluten (a GI having told me I didn't have celiac!), and worsening health problems. The hot flushes gradually came back, and my periods stopped again. Blood tests "confirmed" that I was "post-menopausal" at age 46. I went fully gluten free as a trial under the care of a rheumatologist. Within a few days the hot flushes stopped completely, my periods restarted, and have been perfectly regular in the 5 months since then.

I am convinced that my female problems are linked to my gluten sensitivity.

navigator Apprentice

I was diagnosed by endescopy and biopsy but I'm 54 and also in the menopause. I do have symptons which are common to both diagnosis - mainly crashing fatigue and jointpains/aches. These are so similar that the only way I can differentiate between it being menopause or coeliacs causing it is by accompanying symptons. If I also have heightened hot flushes and night sweats then I put it down to menopause being the main culprit. If I don't have an increase in these but I have problems with bowels, stomach etc then I consider possible accidental glutening. The brain fog accompanies both!On my worst days I have all the symptons and it seems that they're both in overdrive. The G.P. I was originally seeing about my symptons put it all down to menopause. When I went to the G.P. I currently see, he felt that just because I was menopausal did not mean that my symptons could not also be a result of coeliac disease and had me tested. It could very well be that you are both menopausal and coeliac. Don't let the doctors dismiss the coeliac if you're menopausal.

IrishHeart Veteran

It is possible to be experiencing menopausal (or even peri-menopausal symptoms) and still be a celiac.

Many GYN issues are associated with celiac (I had plenty, including multiple miscarriages, endometriosis, ovarian cysts, fibroids, etc. )

I had all the hot flashes, (more like hot drenches :rolleyes: ) insomnia, migraines, heavy bleeding and prolonged periods that come with peri-menopause and that BS started when I was in my late 30's!.(same thing happened to my Mom)

It was awful, quite honestly. My doctor tried everything to make me comfortable, (various BC pills, etc) but the only thing that solved the many problems I had was a complete hysterectomy at 47.

If your symptoms are consistent with menopause and you are gluten free, it could well be peri-menopause. I hope your transition will be a lot smoother than mine because you are gluten-free and working so hard at being healthy!

But don't ever let a doctor tell you anything is "just" menopause :rolleyes: because in my case, it was a whole lot more going on. It was ALSO long- undiagnosed celiac compounding the endless list of GYN/reproductive problems.

AVR1962 Collaborator

Wow.....looks like most of the women (and men) here must be going through menopause! :unsure:

Let's just take everything a woman could possibly complain about and call it menopause. :rolleyes:

And you've had no changes in your cycle?

What kind of test did you have? If you had a positive blood test then you're celiac. Add to that the fact that you have improved on a gluten free diet. Doctor's are so good at making us feel like we don't know what we're talking about. Go with your gut ;) .....and the proof and don't let doctors tell you differently. Trying to label it menopause, to me, is almost as bad as "It's all in your head."

Thanks Lisa, I really do appreciate your reply. I stopped going to docs years ago and stayed away for probably too long because docs wanted to blame female issues on everything I went to them for. I recently stopped taking the Pill to see if there are any changes going on. The list really amazed me though. So then I was wondering if my GP could be right. And that's why I thought I would bring it up here.

curlyfries Contributor

Well, like the other posters have mentioned, you could have both. I just don't understand why doctors would ignore test results and positive dietary response. If they had said, "Ok, you have celiac, but I also think you are menopausal", that would be different.

Looks like you've got it together and realize that gluten free is the way to go for you no matter what some doctors say. :)


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



Celiac.com Sponsor (A8-M):



cougie23 Explorer

I totaly agree with the others! But would like to out out something interesting that happened to me!

Before I was diagnosed...We thought I had MS (untill the MRI) and I was SURE I was going through menapause( I had allmost ALL of the symptoms for BOTH which is one of the reasons this is ALSO refered to as a MIMICING deseise)..But for the sake of conversation we'll just mention the irregular periods,severe hemoraging/but short periods, 2 month long migrane and severe hot flashes and flushes! Then I found out about CELIACS/ Casien intolerance ...adjusted my diet...and started to see results! But a funny thing happened ...There was a time during the HOLIDAYS I cheated...I had dairy..and I noticed every time I had dairy...my gums would start bleeding and become swollen again...My period would be affected... My jaw and neck got severely tense and painful...I got a week long migraine (twice)...and the hot flashes that compleatly disappeared came back...not to mention the leg cramps ( but the leg cramps were directly related to the pumkin pie I snuck!!!) Leson to me... DON'T CHEAT!!!

my point was though...Dairy was the culprit!

I've also sense then developed an insensitivity to potatoes and soy is 50/50!

So you never know?! Our bodys are complicated!

Hope this helps! :D

AVR1962 Collaborator

I totaly agree with the others! But would like to out out something interesting that happened to me!

Before I was diagnosed...We thought I had MS (untill the MRI) and I was SURE I was going through menapause( I had allmost ALL of the symptoms for BOTH which is one of the reasons this is ALSO refered to as a MIMICING deseise)..But for the sake of conversation we'll just mention the irregular periods,severe hemoraging/but short periods, 2 month long migrane and severe hot flashes and flushes! Then I found out about CELIACS/ Casien intolerance ...adjusted my diet...and started to see results! But a funny thing happened ...There was a time during the HOLIDAYS I cheated...I had dairy..and I noticed every time I had dairy...my gums would start bleeding and become swollen again...My period would be affected... My jaw and neck got severely tense and painful...I got a week long migraine (twice)...and the hot flashes that compleatly disappeared came back...not to mention the leg cramps ( but the leg cramps were directly related to the pumkin pie I snuck!!!) Leson to me... DON'T CHEAT!!!

my point was though...Dairy was the culprit!

I've also sense then developed an insensitivity to potatoes and soy is 50/50!

So you never know?! Our bodys are complicated!

Hope this helps! :D

It does help Cougie, thank you! Repeatedly I hear of the hot flashes and night sweats, something I am not having. I do have the skletical pain but I am wondering about my vit D levels as doc cut me back and it may have been too much. I have recently cut back again on my dairy wondering if this could be giving me issues. And I have to look at the possibility of more salicylate sensativity than I have been aware of, as something is getting to me. I do appreciate the replies! What I am reading leads me to beleive that my issues are not due to menopause but symptoms are mimicking something else.

Jestgar Rising Star

While looking up some info about milk for a friend, I discovered several articles about how cows are made pregnant pretty much immediately after giving birth, and are milked all through their pregnancies. The amount of estrogen in the milk is nearly at the same levels as the amount in the cows blood. I wouldn't be surprised if the estrogen in the milk is affecting your own hormones.

Bubba's Mom Enthusiast

I've had a lot of those menopause symptoms for the past 3 years. My Celiac disease went un-Dxed because my Dr. wouldn't consider that I had anything BUT menopause. :o

I had a hysterectomy 22 years ago, at the age of 33. My ovaries were left intact though. Without menses I have no way of knowing what my hormones are doing. I was told that I should go through it earlier than others though, because of the surgery. I don't know if they can test hormones by blood test? It would be nice to know one way or the other?

cougie23 Explorer

I've had a lot of those menopause symptoms for the past 3 years. My Celiac disease went un-Dxed because my Dr. wouldn't consider that I had anything BUT menopause. :o

I had a hysterectomy 22 years ago, at the age of 33. My ovaries were left intact though. Without menses I have no way of knowing what my hormones are doing. I was told that I should go through it earlier than others though, because of the surgery. I don't know if they can test hormones by blood test? It would be nice to know one way or the other?

I have no idea...but I'm thinking that if they can test hormones in your blood for pregnancy...they should be able to test your hormone level ...but I would find another Gyn Dr.(someone more familar with C.) :rolleyes::D Good luck on that!(I'm not being sarcastic..I mean that sencirly!) :P

cougie23 Explorer

While looking up some info about milk for a friend, I discovered several articles about how cows are made pregnant pretty much immediately after giving birth, and are milked all through their pregnancies. The amount of estrogen in the milk is nearly at the same levels as the amount in the cows blood. I wouldn't be surprised if the estrogen in the milk is affecting your own hormones.

Good point...something I've never considered! Dairy gives me horrible hotflashes and migraines!(and throws off my period( I didn't have a period for 2 1/2 months before I was told I was casien/lactose intolerent).Not that I have any intention on going back...but it is good to know! I am perfictly happy with my Blue Diamond french vavilla Almond milk..Thankyou! LOL! But am thinking maybe my whole family should switch...Boys don't need THAT much estrogen....what could it be doing to THEY'RE HORMONES I wonder....(SHUDER)...!!!! :ph34r:

squirmingitch Veteran

Yes, they can do a blood test to see at what point in the menopause process you are or at least roughly. And they can tell you when you are done with menopause by that. I know because they did the test on me early on in the menopause process. They said I was in the peri-menopause stage which is sort of pre or more accurately "on the cusp" of going fully into it. BTW, I too had a hysterectomy when I was 37 but kept my ovaries & I did go into menopause earlier than the average woman. That's the reason they gave me the blood test when I was complaining of night sweats --- my 1st sign of menopause. Furthermore, & this may be TMI but important none the less: The OB/GYN can tell by sight when they examine you. Let's put it this way ~~~ you are no longer pink & shiny but become grey & dry at the end of menopause ~~~ get the picture?ohmy.gif

Bubba's Mom Enthusiast

Yes, they can do a blood test to see at what point in the menopause process you are or at least roughly. And they can tell you when you are done with menopause by that. I know because they did the test on me early on in the menopause process. They said I was in the peri-menopause stage which is sort of pre or more accurately "on the cusp" of going fully into it. BTW, I too had a hysterectomy when I was 37 but kept my ovaries & I did go into menopause earlier than the average woman. That's the reason they gave me the blood test when I was complaining of night sweats --- my 1st sign of menopause. Furthermore, & this may be TMI but important none the less: The OB/GYN can tell by sight when they examine you. Let's put it this way ~~~ you are no longer pink & shiny but become grey & dry at the end of menopause ~~~ get the picture?ohmy.gif

Thanks for this info! I've just found a new PCP and will meet with her soon. I'd like to be tested so I know.

I used to get migraines when I had my period. I got them regularly every month until 2-3 years ago, so I'm assuming I've gone through memopause?

Err...I don't wanna know what color my lady parts are..if they're gonna be "grey and dry"? LOL :lol:

Cougie..you bring up a good point about how the hormones in milk would affect guys. My son likes to shop for shoes.. so, hmm... :rolleyes:

squirmingitch Veteran

Bubba's Mom you're cracking me up! Thanks, I needed that!laugh.giflaugh.giflaugh.gif

Lisa Mentor

While looking up some info about milk for a friend, I discovered several articles about how cows are made pregnant pretty much immediately after giving birth, and are milked all through their pregnancies. The amount of estrogen in the milk is nearly at the same levels as the amount in the cows blood. I wouldn't be surprised if the estrogen in the milk is affecting your own hormones.

Without documentation (or don't have the time now to look it up) I have learned that cows milk may be the cause of ultra-early development in young girls. I offer Organic to my granddaughter.

Lisa Mentor

Without documentation (or don't have the time now to look it up) I have learned that cows milk may be the cause of ultra-early development in young girls. I offer Organic to my granddaughter.

Okay...a quick search found this (although a BLOG)and not substantiated fact.

Open Original Shared Link

....but not must to do with men-o-pause. B)

AVR1962 Collaborator

UPDATE: Wen to Women's health and the symptoms that my primary doc have been questioning as menopausal symptoms, she beleives are actually problems in my back so I am going to have a full back work up. She gave me a clean bill of health.

Ziva Newbie

Very interesting! I could say I relate to more of the symptoms of menopause than to Celiac, but based on the conversation, I can't wait to see if going gluten free will reduce the heart palputations, night sweets, and hot flashes. :) Just new to gluten free and possible diagnosis of Celiac.

GottaSki Mentor

Early menopause was one of the hundreds of theories tossed about before I was diagnosed. Ruled out -- I think it was a hormone level test...ya that sounds right -- I'd have to look back at history for sure.

cougie23 Explorer

Very interesting! I could say I relate to more of the symptoms of menopause than to Celiac, but based on the conversation, I can't wait to see if going gluten free will reduce the heart palputations, night sweets, and hot flashes. :) Just new to gluten free and possible diagnosis of Celiac.

It helped me...Going Gluten and casien free got rid of ALL of that!(and I had forgotten about the heart palapatations....I was getting that real bad!) :ph34r::D ( I actually went to the Hospital because of the heart Palipatations and chest pain...dizziness and seeing stars/spots)!!!Not anymore!!! :lol:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,019
    • Most Online (within 30 mins)
      7,748

    mandaaa218
    Newest Member
    mandaaa218
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
    • Scott Adams
      Oh no, I'm sorry to hear about the accidental gluten! This article, and the comments below it, may be helpful:    
×
×
  • Create New...