The Gluten Free Life For Me! - Long Post

[Amythyst]

Hi everyone, I'm new to the board and just diagnosed with Celiac disease.  I seem to be catching a string of syndroms and disorders so its starting to freak me out... I had been going to my endocrinologist and a reproductive endocrinologist for awhile.  I have had symptoms and problems for at least 10 years and only recently have things started to come to light.  I guess it started when my husband and I wanted to have children and I found out I had PCOS.  My reproductive endo thought I should probably have my thyroid checked and poof you have hypothyroidism too. 

 

I have always been fat, since I was like 8 years old and could gain 5 pounds in a day no matter how I ate or exercised.  Finally, when I got the PCOS and Thyroid diagnosis and got on medication I began to lose weight for the first time in my life and to be able to maintain it!!  So far, I've lost 35 pounds over the last 3 years but still not pregnant.

 

But, even with the PCOS and Thyroid medications - I still have not been "normal".  No matter how much I sleep, I'm usually always tired, I have struggled with vitamin deficiencies for years and years.  My vitamin D is the worst and was at the lowest point 11 - even with 50,000 units a week (on and off) and then maintenance doses of 2,000 to 3,000 a day after getting off of 50,000, I have only ever been able to get my vitamin D up to 33.  It has since fallen back down to 21.  I have skin problems... itchy legs, fluid retention... even with cutting out as much salt as I can, caffeine and alcohol - my feet still swell.  I sweat like crazy and I'm always hot.  I have incredibly dry skin and even with using lotion it never seems to get better.  I also have roseacea on my face and it has started to flare up a lot lately and I get these crazy red bumps all over the redness.  Depending on my stress levels and what I eat, the redness can go down to a pinkish color and the bumps will sort of go away.  And of course my infertility which is frustrating. 

 

Then, there are the other sort of embarassing symptoms... IE:  I've been struggling with diahrea for as long as I can remember.  Depending on what I eat of course... its not as terrible as it used to be though.  I think too the Metformin I take for PCOS varies this.  And I have terrible flatulence... no matter what I eat I'm always gasy, joint and muscle pains, my feet tingle all the time, I was getting headaches constantly but those have died down a bit....

 

Anyhoo, my reproductive endo suggested last year that I should have a celiac study done because of my inability to absorb vitamin D.  Shortly after my husband had 2 major surgeries and almost died, so my health sort of took a back seat.  He is now totally well and I just found myself a new endocrinologist.  I went to my first appointment and of course she wanted to blame all my problems on my weight.  I told her that I'd like to have a celiac test done and she was hesitant and was like you probably can't absorb vitamin D cause you're heavy.  But, she humored me and did the test.  I got a voicemail from her yesterday saying my suspicisions were correct and my celiac study was positive.  She is sending me the test results but I haven't received it yet.  She also told me I should go see a gastro doctor now.

 

So, as of yesterday, I started doing the gluten free thing.  I was pleased to find that lots of stuff I already eat is gluten free but I did make sure I only bought stuff that said gluten free and I will be ceasing all bread and gluten pastas.  I also decided to try to stay away from dairy as well ... I happen to like soy milk... so I got some of that.

 

Luckily, I can say with all this I am a happy person.... I don't let things get me down and I look at everything as a challenge to overcome.  But, I'm just curious if anybody here has the other conditions that I have as well?  It sort of bothers me that I keep getting diagnosed with so many things.  Is hypothyroidism, PCOS and Celiac sort of like a triad of related issues?  I did read on the PCOS sites that it is common to get celiac when you have PCOS. 

 

Anyways thanks for reading... I hope to learn a lot here.

[cyclinglady]

Welcome to the board!  

 

First, you must be eating gluten if your gastro intends to give you a biopsy!  So, don't stop the gluten yet!  

 

Here's a newbie thread that's invaluable.  There's more to gluten free than just the foods you eat.  Cross contamination can be a big issue if others in your home are gluten eaters (my whole family went gluten free and indulge pretty much outside the home).   Then there are tips for healing your intestinal tract too!  Most celiac disease patients can't digest lactose (dairy) until they healed (6 months or longer), so you might try cutting that out (I'm allergic to milk, ugh!)  Finally, you may discover that you have lots of food intolerances that you didn't even know you had.  You can address that later.....

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

I have Hashi's too and was deficient in iron and calcium (broke a vertebrae two months ago doing nothing!)  I also have Rosacea, but don't have any issues.  Food allergies/intolerances triggered all my rosacea symptoms.  So, that means avoid/eliminate food that bother me and I can't drink wine (most celiac disease patients need to avoid alcohol for a little while).  

 

Good luck!  

[nvsmom]

Welcome to the board. 

 

You've got a pretty common triad, that's for sure. There are more than a few board members around here dealing with similar issues. I myself have hypothyroidism but skipped PCOS in favour of a different autoimmune problem.  LOL The good news is that other AI problems often improve after a time (months to years) on the gluten-free diet.

 

Be careful about going gluten-free before seeing the Gastro as he may want to do additional testing, like an endoscopic biopsy or other blood tests, and if you have been gluten-free for a time, that could cause false negative results.

 

You might want to get more nutrient tests too. Celiacs often low in K, Ca, Fe, B's, D, A, zinc, and ferritin. 

 

If your thyroiditis is not optimally treated, that could affect your energy too. Many think, for those with thyroiditis, TSH should be near a 1, and free T3 and free T4 should be in the 50-75% range of your lab's normal reference range.

 

Good luck! 

[Amythyst]

Thanks for the tips!  Hmm... guess I didn't think about that with the gastro.  I actually abhor the idea of having to go to a gastro and doing either a biopsy or endopic procedure.. blah.

 

My thyroid is under control... has been for a while.  My TSH stays at 1.9 pretty much whenever it is tested... my endo has never mentioned it needing to come down any more than that.  My Free T3 and T4 were also normal.

 

Agree, I was going to get my gastro to run the other nutrients when I go see him... my endo docs have always only been concerned with the vitamin D. 

 

@cyclinglady:  My roseacea seems to be triggered more by my emotional state.  If I cry, get anxious, stress... I can almost feel the bumps start to pop up.  I used to be in a mild stage where I just had the rosey red cheeks but now I'm passing into moderate area where I'm getting the red bumps.  I got stressed at work for example yesterday and by the time I came home my face was totally red and my bumps were not just on my cheeks but spreading to my forehead and farther down my cheeks.  I put some cream on it and when I woke up this morning I'm back to a more rosey complexion.   So, I'm not sure if any food I eat is particularly sensitive to it or not.  I never noticed that. 

 

I do have the world's worst enviornmental allergies ... I'm basically allergic to nature!   But every time I've had food allergy tests nothing came back except sesame. 

 

Thank you for the info and I will check out that thread.

[Nwalter]

Hi everyone, I'm new to the board and just diagnosed with Celiac disease.  I seem to be catching a string of syndroms and disorders so its starting to freak me out... I had been going to my endocrinologist and a reproductive endocrinologist for awhile.  I have had symptoms and problems for at least 10 years and only recently have things started to come to light.  I guess it started when my husband and I wanted to have children and I found out I had PCOS.  My reproductive endo thought I should probably have my thyroid checked and poof you have hypothyroidism too. 

 

I have always been fat, since I was like 8 years old and could gain 5 pounds in a day no matter how I ate or exercised.  Finally, when I got the PCOS and Thyroid diagnosis and got on medication I began to lose weight for the first time in my life and to be able to maintain it!!  So far, I've lost 35 pounds over the last 3 years but still not pregnant.

 

But, even with the PCOS and Thyroid medications - I still have not been "normal".  No matter how much I sleep, I'm usually always tired, I have struggled with vitamin deficiencies for years and years.  My vitamin D is the worst and was at the lowest point 11 - even with 50,000 units a week (on and off) and then maintenance doses of 2,000 to 3,000 a day after getting off of 50,000, I have only ever been able to get my vitamin D up to 33.  It has since fallen back down to 21.  I have skin problems... itchy legs, fluid retention... even with cutting out as much salt as I can, caffeine and alcohol - my feet still swell.  I sweat like crazy and I'm always hot.  I have incredibly dry skin and even with using lotion it never seems to get better.  I also have roseacea on my face and it has started to flare up a lot lately and I get these crazy red bumps all over the redness.  Depending on my stress levels and what I eat, the redness can go down to a pinkish color and the bumps will sort of go away.  And of course my infertility which is frustrating. 

 

Then, there are the other sort of embarassing symptoms... IE:  I've been struggling with diahrea for as long as I can remember.  Depending on what I eat of course... its not as terrible as it used to be though.  I think too the Metformin I take for PCOS varies this.  And I have terrible flatulence... no matter what I eat I'm always gasy, joint and muscle pains, my feet tingle all the time, I was getting headaches constantly but those have died down a bit....

 

Anyhoo, my reproductive endo suggested last year that I should have a celiac study done because of my inability to absorb vitamin D.  Shortly after my husband had 2 major surgeries and almost died, so my health sort of took a back seat.  He is now totally well and I just found myself a new endocrinologist.  I went to my first appointment and of course she wanted to blame all my problems on my weight.  I told her that I'd like to have a celiac test done and she was hesitant and was like you probably can't absorb vitamin D cause you're heavy.  But, she humored me and did the test.  I got a voicemail from her yesterday saying my suspicisions were correct and my celiac study was positive.  She is sending me the test results but I haven't received it yet.  She also told me I should go see a gastro doctor now.

 

So, as of yesterday, I started doing the gluten free thing.  I was pleased to find that lots of stuff I already eat is gluten free but I did make sure I only bought stuff that said gluten free and I will be ceasing all bread and gluten pastas.  I also decided to try to stay away from dairy as well ... I happen to like soy milk... so I got some of that.

 

Luckily, I can say with all this I am a happy person.... I don't let things get me down and I look at everything as a challenge to overcome.  But, I'm just curious if anybody here has the other conditions that I have as well?  It sort of bothers me that I keep getting diagnosed with so many things.  Is hypothyroidism, PCOS and Celiac sort of like a triad of related issues?  I did read on the PCOS sites that it is common to get celiac when you have PCOS. 

 

Anyways thanks for reading... I hope to learn a lot here.

Hi, sounds like you have been going through some very frustrating diagnoses.  I have been having many of the symptoms you described and about a year and a half ago I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome; that after years of complaining to my doctor off and on of symptoms. I was not happy with my diagnosis (I too have an extremely hard time absorbing Vit D except through UV exposure and a multitude of vitamin deficiencies which were never addressed). After having years of chronic constipation, even when trying everything natural and unnatural to be regular, I heard about being gluten intolerant and decided to pay attention to my reaction to gluten.  I didn't really take it seriously until the Mayo Clinic listed "Decreased Dental Health" as one of the symptoms (I had been having pain, tooth loss and infections for over a year which I had never had before and I attributed it to my low Vit D).  As soon as I read that symptom I stopped eating anything with gluten in it and low and behold 3 days later the pain and infection disappeared (however it comes back when I have a cross contamination issue). 

For me being gluten free is less frustrating that it can be for most people because my system reacts very violently and immediately to exposure. I bloat and become nauseated within minutes and spend 1-3 days with "Fibromyalgia" symptoms along with constipation/diarrhea , pain and fatigue.   As hard as it is to not eat my favorite crackers the reaction to it keeps me from doing it.

I do have infertility (did have) but it is from a congenital adrenal disorder so I know it is not related. I worked with an endo/fertility doctor and have a teen daughter.  The Vit D like you is very frustrating even when taking high doses; when the Mayo Clinic told me I had Fibromyalgia and very low Vit D (7) I was told to take 3500 a day and I shot back that I was already taking 5000 a day. I'm also anemic and was told my RLS is from low iron ----but honestly most of my symptoms from all of what I have been diagnosed with dissipate when remaining gluten free (even a little cross contamination makes me violently ill).  Today is a day that is not good all because I had a bite of rotisserie chicken and potato salad (modified food starch!). I won't be doing that again.

Good luck to you and I am glad that I found this website so I have others who understand and can relate to. It is good to hear that I am not making this all up in my head and these weird things aren't just happening to me!

[1desperateladysaved]

Here's hoping you will be on your way to your better health in the near future!

***

D

[frieze]

Hi everyone, I'm new to the board and just diagnosed with Celiac disease.  I seem to be catching a string of syndroms and disorders so its starting to freak me out... I had been going to my endocrinologist and a reproductive endocrinologist for awhile.  I have had symptoms and problems for at least 10 years and only recently have things started to come to light.  I guess it started when my husband and I wanted to have children and I found out I had PCOS.  My reproductive endo thought I should probably have my thyroid checked and poof you have hypothyroidism too. 

 

I have always been fat, since I was like 8 years old and could gain 5 pounds in a day no matter how I ate or exercised.  Finally, when I got the PCOS and Thyroid diagnosis and got on medication I began to lose weight for the first time in my life and to be able to maintain it!!  So far, I've lost 35 pounds over the last 3 years but still not pregnant.

 

But, even with the PCOS and Thyroid medications - I still have not been "normal".  No matter how much I sleep, I'm usually always tired, I have struggled with vitamin deficiencies for years and years.  My vitamin D is the worst and was at the lowest point 11 - even with 50,000 units a week (on and off) and then maintenance doses of 2,000 to 3,000 a day after getting off of 50,000, I have only ever been able to get my vitamin D up to 33.  It has since fallen back down to 21.  I have skin problems... itchy legs, fluid retention... even with cutting out as much salt as I can, caffeine and alcohol - my feet still swell.  I sweat like crazy and I'm always hot.  I have incredibly dry skin and even with using lotion it never seems to get better.  I also have roseacea on my face and it has started to flare up a lot lately and I get these crazy red bumps all over the redness.  Depending on my stress levels and what I eat, the redness can go down to a pinkish color and the bumps will sort of go away.  And of course my infertility which is frustrating. 

 

Then, there are the other sort of embarassing symptoms... IE:  I've been struggling with diahrea for as long as I can remember.  Depending on what I eat of course... its not as terrible as it used to be though.  I think too the Metformin I take for PCOS varies this.  And I have terrible flatulence... no matter what I eat I'm always gasy, joint and muscle pains, my feet tingle all the time, I was getting headaches constantly but those have died down a bit....

 

Anyhoo, my reproductive endo suggested last year that I should have a celiac study done because of my inability to absorb vitamin D.  Shortly after my husband had 2 major surgeries and almost died, so my health sort of took a back seat.  He is now totally well and I just found myself a new endocrinologist.  I went to my first appointment and of course she wanted to blame all my problems on my weight.  I told her that I'd like to have a celiac test done and she was hesitant and was like you probably can't absorb vitamin D cause you're heavy.  But, she humored me and did the test.  I got a voicemail from her yesterday saying my suspicisions were correct and my celiac study was positive.  She is sending me the test results but I haven't received it yet.  She also told me I should go see a gastro doctor now.

 

So, as of yesterday, I started doing the gluten free thing.  I was pleased to find that lots of stuff I already eat is gluten free but I did make sure I only bought stuff that said gluten free and I will be ceasing all bread and gluten pastas.  I also decided to try to stay away from dairy as well ... I happen to like soy milk... so I got some of that.

 

Luckily, I can say with all this I am a happy person.... I don't let things get me down and I look at everything as a challenge to overcome.  But, I'm just curious if anybody here has the other conditions that I have as well?  It sort of bothers me that I keep getting diagnosed with so many things.  Is hypothyroidism, PCOS and Celiac sort of like a triad of related issues?  I did read on the PCOS sites that it is common to get celiac when you have PCOS. 

 

Anyways thanks for reading... I hope to learn a lot here.

metformin can lead to a vitamin B12 def., which would contribute to your fatigue.

[Amythyst]

Really?  Wow nobody ever told me that... I will definately be asking for a full vitamin work up when I get my next blood panel.  Fricken vitamins.   There's so many different things they can do to our bodies... either having too much or too little.

 

Thank you all for the great stories and advice.

 

@NWalter:  No, you're not crazy... and I'm glad the doctors can't just blame all my symptoms on my weight anymore.  Sometimes, our weight is not entirely our fault.  Not that Im looking for an excuse, but it certainly helps knowing that certain health struggles aren't all totally because of our own mistakes.

[LauraB0927]

Welcome to the forum!  You will get a ton of great advice on here - so many people are willing to help and share their experiences....it also may make you happy to know that going gluten free to help heal your system may also help with your fertility.  A common symptom of untreated Celiac is infertility and you will see a lot of people on here had much more success with getting pregnant after they went gluten free.  There's a pregnancy forum on here where you can get great advice.  The good thing is that now you have a huge piece of the puzzle figured out - I feel very positive that a lot of those symptoms that you were describing will get better once you begin the diet.  I had pretty bad eczema  that would come out of nowhere.  Started the gluten free diet and it disappeared.  Same with the fatigue, swelling, and water retention.

 

Definitely read the Newbie threat - I know you mentioned stopping the breads and pastas, but there are TONS of other things that have gluten hidden in them - gravy, sauces, make-up, toothpaste, shampoo, play-dough, fake crab meat, etc.  Remember, its not just wheat and the obvious sources.  You will also need to cut out barley, rye, malt, and oats (unless the oats are labeled gluten free).  So beer is off the table now because of the barley.  There are some great free apps on smartphones that will help you in terms of checking ingredients and locating places to eat in the area.  I use "Gluten Free Registry" which has been a huge help in tough situations.  Best wishes to you!!!!   

[Amythyst]

Oh, I also wanted to ask... does anybody have any blood pressure issues with Celiac?  I'm on Maxide with HCTZ and every time I go to the doctor's office its always like 150/110 (which I just can't believe).  If I take my pressure at home its usually normal like 125/88.  I have terrible anxiety and stress when I go to the doctor even if its just a routine visit cause I just hate going.  If it caused water retention and swelling I was thinking maybe it would be the culprit for my elevated pressure... It just didn't make sense to me why it would be high if I'm on medication. 

[cyclinglady]

Oh, I also wanted to ask... does anybody have any blood pressure issues with Celiac?  I'm on Maxide with HCTZ and every time I go to the doctor's office its always like 150/110 (which I just can't believe).  If I take my pressure at home its usually normal like 125/88.  I have terrible anxiety and stress when I go to the doctor even if its just a routine visit cause I just hate going.  If it caused water retention and swelling I was thinking maybe it would be the culprit for my elevated pressure... It just didn't make sense to me why it would be high if I'm on medication. 

No blood pressures issues here, but you may have what my Dad gets "White Coat Anxiety".  His blood pressure was always sky high when he went to the doctor.  So, our old family doc would do the visit and then take his blood pressure.  It was always dramatically lower!

 

I go to two different docs (allergy and GP).  My allergist is smart.  He personally takes my blood pressure at the conclusion of the visit and at the very last minute he weighs me.  I always have low BP.  My GP (PCP) nurse, weighs me, then takes my blood pressure.  Of course, it's ALWAYS higher than when I'm at my allergist's office.   I tell them this, but they refuse to change their procedures.  

[1desperateladysaved]

Yes, I have had blood pressure issues.  My blood pressure would drop as I stood up and stay down.  I felt like I was crashing.  Yet, I overall had high blood pressure.  This came down with supplements, but it is always higher when the doctor's office takes it.  At home lately it has often been 90/60.  Once upon a time my doctor noticed my blood pressure was high at the beginning of the appointment, but at the end it had gone down.

 

My Mom always called high blood pressure "The family curse."  With grandparents and parents having had high blood pressure.  To my knowledge, I am the only one that had the high blood pressure go away.  My siblings haven't had it, In case anyone is interested, I have two copies of DQ2 and Two copies of DQ8.