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Dermatitis Herpetiformis ... My Journey

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Well, I have had a super busy week and lost track of the postings! Soon, but not soon enough, I will be on summer holidays. For now though, its report cards and the chaos of the end of a school year! 

Anyways, CT scan results:

 

-mild cerebral atrophy...doesnt sound good to me, especially becuase I am only 35! Any insight on this would be appreciated! 1 thing I do know is that it can happen prematurely due to lack of B12 and can regenerate. My B12 results..342...Doc says 200 is severe B12 deficiency and anythong over 400 is normal, 800 being a good, average number...mine is borderline deficient. That was tested with supplements in my system. 

 

ok back to CT results: 

    -enlarged jugular bulb

    -rt jugular bulb diverticulum...basically no bone left inbetween the jugular bulb and the middle ear.

 

any insight??? So weird, so rare and so confusing! 

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the jugular so close to the ear may be the cause of pulsatile tinnitus.  The fact that you didn't stop the supplement at least 4/5 days before testing, negates that testing.  large doses of B12 appear to be in your future!

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the jugular so close to the ear may be the cause of pulsatile tinnitus.  The fact that you didn't stop the supplement at least 4/5 days before testing, negates that testing.  large doses of B12 appear to be in your future!

I would have stopped but I actually only asked for the B12 blood test on my way to the clinic prior to my CT bloodwork. I am going to increase my B12 fthrough supplements and see if I notice a difference of any kind. 

 

BTW I think I ate non gluten free soy sauce last night. I broke out this morning in various itchy spots. Holding onto hope that they dont progress to a full blown DH breakout.

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This is well worth watching ... "Gluten and Autoimmunity Explained in 20 Minutes"

 

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That is EXCELLENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Thank you!

 

And this really should be posted in this forum so the rest of the celiac.com community can benefit from it:

http://www.celiac.com/gluten-free/forum/17-celiac-disease-related-disorders-research/

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That is EXCELLENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Thank you!

 

And this really should be posted in this forum so the rest of the celiac.com community can benefit from it:

http://www.celiac.com/gluten-free/forum/17-celiac-disease-related-disorders-research/

 

Can you do that please and thank you : ) You know where it belongs  : )

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YVW.

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YVW.

 

Thank you ... and here's another video that is worthwhile watching.

I'll post this over on the other forum too.

 

Second Opinion: Celiac Disease

 

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Well, I have had a super busy week and lost track of the postings! Soon, but not soon enough, I will be on summer holidays. For now though, its report cards and the chaos of the end of a school year! 

Anyways, CT scan results:

 

-mild cerebral atrophy...doesnt sound good to me, especially becuase I am only 35! Any insight on this would be appreciated! 1 thing I do know is that it can happen prematurely due to lack of B12 and can regenerate. My B12 results..342...Doc says 200 is severe B12 deficiency and anythong over 400 is normal, 800 being a good, average number...mine is borderline deficient. That was tested with supplements in my system. 

 

ok back to CT results: 

    -enlarged jugular bulb

    -rt jugular bulb diverticulum...basically no bone left inbetween the jugular bulb and the middle ear.

 

any insight??? So weird, so rare and so confusing! 

 

 

I had a bit of shrinkage show on my brain MRI.  Doctor told me they see this with Alzheimer's (my Mother had this) and it is a bit scary.  He also mentioned MS but . . . hey, I AM NOT a doctor.  You should ask him to explain every detail of your scans.

 

I tell each doctor I need an explanation in 'normal' terms.   :rolleyes:   We go line by line and until I'm like . .  ok, I understand.  I had an MRI show that all of my brain was functioning at 1/2 level.  When the doctor told me that, I reached over and slapped his arm and said, "Right . . . "  as I laughed at him.  He looked at me and said, "I'm serious but we won't worry about that, it could be a machine malfunction."   

 

Take charge of your patient records. . . . ask questions ! ! !

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I had a bit of shrinkage show on my brain MRI.  Doctor told me they see this with Alzheimer's (my Mother had this) and it is a bit scary.  He also mentioned MS but . . . hey, I AM NOT a doctor.  You should ask him to explain every detail of your scans.

 

I tell each doctor I need an explanation in 'normal' terms.   :rolleyes:   We go line by line and until I'm like . .  ok, I understand.  I had an MRI show that all of my brain was functioning at 1/2 level.  When the doctor told me that, I reached over and slapped his arm and said, "Right . . . "  as I laughed at him.  He looked at me and said, "I'm serious but we won't worry about that, it could be a machine malfunction."   

 

Take charge of your patient records. . . . ask questions ! ! !

 

As one of the guests pointed out in the Second Opinion video I posted above ... this is the chameleon of diseases. And it manifests itself in many different ways. We are lucky if we find a doctor who has the time to explain things and I always, always get copies of my medical notes from each visit. I keep a file of my own medical history. That comes from going back to the same doctor/s and having my records gone missing!

 

The other thing I'm finding really interesting is the book my dietitian recommended:

 

"How doctors think" by Jerome Groopman

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As one of the guests pointed out in the Second Opinion video I posted above ... this is the chameleon of diseases. And it manifests itself in many different ways. We are lucky if we find a doctor who has the time to explain things and I always, always get copies of my medical notes from each visit. I keep a file of my own medical history. That comes from going back to the same doctor/s and having my records gone missing!

 

The other thing I'm finding really helpful is the book my dietitian recommended:

 

"How doctors think" by Jerome Groopman

 

 

I will not accept a doctor not taking the time to explain to me.  I am paying the bill (or my ins is) and I've never met one that would not sit down with me.  I have seen a minimum of 12 doctors since February of this year and not one has not been denied an explanation and of course, always give me a report.

 

I worked for 6 years at a hospital, 3 years with a group of doctors in an IPA, 7 years in politics . . . when you have met President Reagan, VP Quayle, many US Senators (worked for one) and of course all the state politicians.  I am not intimidated by nary a person.   :)   I write this with a HUGE smile on my face.  I interviewed a lady for IT at the IPA and was really impressed with her CV.  The president (MD) of our group just laughed at me.  He said, "What impresses you about her? I want to know as no one has bowled you over yet."   We had a good laugh about that one.

 

Doctors are normal people that have chosen to commit to caring for others. . .  BTW, I was trying to encourage Mamat78 to ask questions.  It is our body, our money and we need educated answers from our caregivers.    :D

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I think I need to clarify my statement in post # 162 from my perspective. I've nursed in three different countries and I don't live in the US. It has taken me 40 years to get a diagnosis. I have simply shared my journey and my experience/findings. 

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Yes, we get it. Unfortunately :).

Dh is life altering. I changed my life to accommodate that rash. It effects your body, mind....disfigured you, and makes you cry.

Most doctors don't recognize it, and fewer can get an accurate biopsy from it. Often you've been treated with steroids for "mystery rash", so blood and skin tests can be falsely negative, IF a doctor was suspicious.

You're left with setting your jaw and plowing forward with gluten-free if you're lucky enough to figure it out on your own.

So, we get it. Feel free to vent and scream and ask questions. I sincerely hope this is your answer because chronic mystery skin diseases can be horrible to live with.

Please do NOT underestimate the power of a gluten-free and low iodine diet in the beginning, if this is dh. High iodine foods made my rash flare hideously, even while strictly gluten-free. Not everyone is as sensitive to iodine as I was - and quite frankly, that sensitivity was enough to "seal" my dx...

Good news, if you are iodine sensitive you may find it a drug-free way of controlling the rash. I was strictly low iodine two weeks, then started adding back slowly. I found I was more sensitive to certain high iodine foods - egg yolks, carrageenan, asparagus, potatoes. Everything else I could tolerate quite well. I think iodine is cumulative - so I ramped up intake over 3 months, and by then I was able to eat anything but gluten.

 

Back in 2010 I was having the "leaky gut" symptoms. It was nonstop. I just couldn't figure out what was causing it. Finally in 2011 I went to a gastroenterologist and had to have some tests for a clotting disorder I was taking Warfarin for before could have an endoscopy and colonoscopy done. I had to be off of those medications prior to and resume them after the procedure. It took until April for those tests to get back and come to find out I never had the genetic clotting disorder I was treated for 20+ years. I had the colonoscopy in June 2011 and they discovered an anal polyp the size of a tennis ball. It took three colonoscopies and a major surgery to remove the polyp and its stem. During my journey a retired doctor made a comment that many of my symptoms sounded to her like Celiac Disease. Made sense to me so at the end of 2010 I started a rigid gluten free diet without having tests done. Some of my symptoms did clear but not all of them since the polyp was partially to blame at the very least. The GI guy really did not believe that I was Celiac but was unwilling to say for certain that was the case. Around March of 2012 I ate a cauliflower salad at a restaurant and I thought it might have bread crumbs on it. Nothing happened but I still proceeded with caution because I was so much better and I didn't want to mess with success.  

 

Finally I ate a sandwich and nothing happened. So, gluten became my friend again. Then earlier last month I was going through a very stressful period in my life. I noticed my joints were swelling. I could hardly even walk. I was having trouble breathing. My elbows would hardly allow me to lift anything. I ached at night. I couldn't sleep. But one thing I didn't have was the "leaky gut" stuff like I did in 2010-2011. Then one Saturday night we ordered in pizza and I drank a beer with it and it was so good tasting on a hot Saturday night I drank another. I woke up with a rash that I thought at first was scabes or bedbugs. They were SO painful. Sunday night we had Rigatoni. Monday morning my rash had spread and continued to do so. One thing I noticed was the rash was much worse every other night (the nights I wash my hair). I went to the doctor and he prescribed cortisone cream. It just kept spreading and finally turned into a mass of sores and ulcerations that oozed and blackened. A doctor came into where I worked and told me to take antihistamines for it, both Pepcid and Benedryl. I was so much better after doing so. But the other thing I did was start eliminating gluten because I thought it would help my joints because they were still really bad. Then the condition got SO bad I went to the emergency room and the doctor ordered prednisone orally. I finally got relief and slept that night. He told me to go to the clinic the next day. That same night when I washed my hair I noticed that my legs burnt a bit. Not like before but they burnt. Finally at 3AM I got up, read the shampoo bottle which read, HYDROLYZED WHEAT and I showered and shampooed my hair with another product and was able to sleep again.

 

I went to the doctor that told me to take the histamines and she brought in another doctor to look at my legs, arms, etc. and diagnosed this as vasculitis. They told me at the time it could be idiopathic and I might never have this happen again but I had a feeling all along this had to do with the two Coors Light's I drank the Saturday prior to this coming on. I kept addressing that with both doctors. I had a battery of lab tests and a skin biopsy. The doctor called me a couple of days later with the results of the biopsy and the available lab tests. The biopsy was diagnosed as Vasculitis and all of my other tests were within normal range except for my white blood count which was elevated because of taking prednisone. I took large doses of prednisone and am in the process of tapering off but there are remaining scars and deep ulcerations left on my legs and arms. Ten days after I went to the doctor I went back to have my biopsy stitches removed and for her to take a look at the ulcerations to make sure they weren't infected. She went over my lab work with me again and she said, "Oh, here is one that wasn't back yet when I talked to you! OMG, you are Celiac!" She brought in two doctors because at the top of the Celiac Panel it said, "NEGATIVE" but at the bottom there was a lab test that was WAY high it removed all doubt that I have the disease. Both doctors seemed to agree that when this test that was SO high is high then a person has Celiac. Then she proceeded to say that she did have to test me for Hepatitis B and C just because it was a prudent thing to do.

 

So, a couple of things. Why would the biopsy results be Vasculitis if it was in fact Dermatitis Herpetiformis? Can't they tell the difference? Are my joints better because of the Prednisone or because of the gluten free diet? Why do the Hepatitis Screens? Are they just making sure I don't have that on top of the Celiac? I'm just confused about all of this. I've been through the Gluten Free for a year and a half so I quickly resumed that. I bought new pots and pans, cleaned out the pantry, etc. donating gluten foods to food banks.... I just know I never ever want that rash again so I would really like to know for certain that it was the Dermatitis Herpetiformis. A year went by with me eating gluten with hardly any symptoms at all until I broke through with the horrible rash. How does that happen? You would have thought I would have reacted much sooner having been gluten free and then resumed eating gluten.

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Kelly, (((((((((((((((((((HUGS)))))))))))))))))))))))) You've been through hell. 

Okay, I don't have all your answers but I can say this ~~~ it seems there is some point when the GI symptoms of celiac stop or go down to mild and instead the rash kicks in. We read it over & over here. I myself, now know that I had the GI symptoms when I was a teen & then things seemed to go into remission for years probably aided by the fact that we didn't eat that much gluten as my hubs hates sandwiches,  we didn't drink, we were never very fond of cakes & cookies & so forth. But then I began to get the rash.

Not all celiacs end up morphing into dh ~~~ sometimes the celiac w/o the dh nearly kills as we have a # of members here who have barely survived the disease.

Your joints are likely better from a combo of prednisone & gluten-free diet. Are you off the prednisone now? I will warn you if you are not that the rash comes back with a vengeance when you discontinue the steroids. 

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so sorry that you had to deal with that outbreak! I totally connected with you when you talked about prednisone because I marched into my doc after 3 months of an outbreak and was willing to take anything that would possibly work. Prednisone was at the top of my list but at the bottom of my dr so I dealt with it for another 3 months before it finally cleared up. Glad that you finally have a diagnosis. I know for me, there were times where I would break out when I would eat gluten and then other times where things seemed fine so when I was trying to figure it all out, I wasnt sure of anything anymore. I am now gluten free for 6 weeks and not a rash to be found on my body. I know that I have been cc'd once or twice and within 2 hours, I am itchy from head to toe but it hasnt seemed to take hold and break out in a full blown DH rash but rather just itchy like an allergic reaction and then subsides through the night. 

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I will not accept a doctor not taking the time to explain to me.  I am paying the bill (or my ins is) and I've never met one that would not sit down with me.  I have seen a minimum of 12 doctors since February of this year and not one has not been denied an explanation and of course, always give me a report.

 

I worked for 6 years at a hospital, 3 years with a group of doctors in an IPA, 7 years in politics . . . when you have met President Reagan, VP Quayle, many US Senators (worked for one) and of course all the state politicians.  I am not intimidated by nary a person.   :)   I write this with a HUGE smile on my face.  I interviewed a lady for IT at the IPA and was really impressed with her CV.  The president (MD) of our group just laughed at me.  He said, "What impresses you about her? I want to know as no one has bowled you over yet."   We had a good laugh about that one.

 

Doctors are normal people that have chosen to commit to caring for others. . .  BTW, I was trying to encourage Mamat78 to ask questions.  It is our body, our money and we need educated answers from our caregivers.    :D

I have been away for a week or so but I am glad I came back to read! I will make an appointment tomorrow to see my doc this week. I am usually really good at asking questions but she skipped over the "mild cerebral atrophy" line and went straight to the actual cause of the pulsatile tinnitus, which she didnt even understand! I cant seem to find a whole lot of info on it either so I hope that the ENT doc has some answers. 

I did read, though, that low b12 can be the cause of cerebral atrophy. I am taking 2000mcg of b12 per day and am going to ask to be retested to see if my numbers have come up. 

 

THanks for your words about asking questions...if only I had time to fill you in on my experience with my current doctor (who is NOT dealing with my now) regarding me asking questions...that was a case of me knowing more than her and her not accepting that very well. I am not a pushy person but I broke down and told her I am tired of being told to suck it up...it did get me a CT scan which DID get me a starting point. :) 

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This was a symptom that was becoming more and more frequent for me towards the end of my gluten feasting life.

 

It's a most unpleasant and worrisome experience ... I'm sure you've seen this info but for anyone who hasn't, this gives a good overview of what it is:  http://www.tinnitus.org.uk/pulsatile-tinnitus

 

I have not had one episode of this since I went gluten free! 

I'm brand new to this. My children have been diagnosed as having a gluten sensitivity. My youngest daughter kept sending me info on celiac disease, thinking I should be tested also. I have had all the symptoms for 30-40 years, and no one has put it all together yet. I've been diagnosed with chronic fatigue syndrome, irritable bowel syndrome, have brain fog a lot, have had the blisters for DH that no one has figured out what it is until now. I have been hospitalized 4 times for oxalate kidney stones, not to mention the myriad of ER visits and ones that I have passed on my own. With at least 3 a year, I've had over 100 stones. My constipation and heartburn was not even considered as a symptom of celiac disease; I didn't have diarrhea, so of course it couldn't be celiac disease. Plus, my youngest child is a person with autism. (I've read mothers with celiac disease are 3 and 1/2 times more likely to have a child with autism.) Oh, yeah, and the incredibly poor teeth - just lost another one last week. So I wish that there was an easier way for doctors to put all of this together. Also, the health insurance issue. Having insurance with a $3000 deductible makes it hard for doctors to recommend running tests as they know it's really expensive. But right now I'm a bit annoyed that the puzzle pieces didn't come together years earlier and that there wasn't someone to help me before I got this old.

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I'm kind of wishing I knew how many "more" posts I need to make, doggone it! It's frustrating being new, realizing you have an autoimmune disorder, and can't really talk to anyone yet.

 

I have a question regarding dermatitis herpetiformis. Will doing a skin biopsy once the blisters are gone and are beginning to heal still work? I have lots of peeling skin left, but most of my blisters have disappeared. I think I have a few more starting on another finger as I can feel the itching starting. Does anyone have any information about this? 

 

Thanks so much!

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I'm kind of wishing I knew how many "more" posts I need to make, doggone it! It's frustrating being new, realizing you have an autoimmune disorder, and can't really talk to anyone yet.

 

I have a question regarding dermatitis herpetiformis. Will doing a skin biopsy once the blisters are gone and are beginning to heal still work? I have lots of peeling skin left, but most of my blisters have disappeared. I think I have a few more starting on another finger as I can feel the itching starting. Does anyone have any information about this? 

 

Thanks so much!

It needs to be a fresh outbreak

http://www.cureceliacdisease.org/archives/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed

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Why is it so hard to get a biopsy from dermatitis herpetiformis? I have read that positive blood work plus a diagnosis of dermatitis herpetiformis, preferably with a biopsy, is pretty much proof positive of celiac disease and that you then may not have to have an endoscopy of the small intestine. Have I missed something on this?

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I became extremely ill, knew when I bit into the flour, stopped eating immediately, reacted worse then ever in the days following, I finally went for testing - I had a 1st cousin who was gold standard Celiac diagnosed. It however took her if I recall correctly 2 years and over a dozen Dr's. I had so many symptoms off the charts then ever I crawled to Dr's desperate to get some help for my symptoms. Unfortunately not much relief , but an allergist/immunologist finally got me to a Celiac team. I had to wait 2-3 months to get in. 2. Eating gluten for 2 weeks and getting an endoscopy - am I allowed to request this??  Yes- as cycling lady said insurance may not allow this/pay for it.  My doctors took me this route. We verified before insurance would pay- we still had co pays and bills. I told them I knew I could not do a 12 week challenge and my husband agreed. I at first refused to do the 2 week challenge, but would do a scope. I eventually gave in and for my kids (and since I still had many horrible symptoms) I said ok I'll try to do scope me both ends. I was mis diagnosed as IBS for 20 plus years based on symptoms only. I failed I could not get past day 6. I stopped tried to do a seventh day but could not.  I am not trying to discourage you from doing this- it was not for naught. I was trying to do the dual gluten/gluten-free household the ordeal taught me (and my husband stated) all gluten is being removed from this house. I needed this more than I ever new. We also learned my son had my issues, and that I had multiple additional food intolerances that had to be removed. I hated the experience, but on a good day I am grateful for the team who helped reveal this to me. I was so messed up for so long I could not see the forest through the trees. They took me off all processed foods even gluten-free and had me keep a stringent food diary. 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Question & Concern #2: I was tested for hypothyrodisim because everyone in my maternal family has been diagnosed with that but they all were diagnosed later in life (early 40s, I believe my mother went through premature menopause becuase it was undiagnosed for so long). Nobody in my family has heard of Hashimotos but when talking with my friend who is a nurse who has Hashimotos she said that sometimes the TSH test that I was given won't pick up on that. My TSH result was a 2.6 which I believe is slightly higher than the ideal range although the normal range on that result was considered up to a 5. I am going to go in and request to make sure that I don't have hypothyroidism of any kind including Hashimotos. Does anybody have any relevant advice for what tests I should request? I have been googling it but I was wondering if anybody went through that and has personal experience for the tests.  I am glad cycling lady responded. I immediately thought of her.  I know when I am on gluten my thyroid feel off. I have been checked 2-3 times in life and I test "normal" , but I feel it is faltering. My mom (a nurse) after all this stuff stated you might be subclinical, enough you feel it, but the test doesn't catch it. I take comfort in her wisdom.   Good luck on y our journey
    • Yes, even with a positive on the genetic test and feeling better on a gluten free diet, does not mean you have celiac disease.  You could have a sensitivity (all the symptoms, but no intestinal damage) or you could have issues with FODMAP foods (wheat is one of them).  The gold standard is still the intestinal biopsy.  Again, if your antibodies were super high, then odds are you would have celiac disease.  Really nothing elevates  celiac disease antibodies super high other than celiac disease.  They might be slightly elevated for other autoimmune disorders. I will share my story.  My hubby went Gluten Free 16 years ago per the POOR advice from our GP and my allergist.  Oh,  the diet worked after a year of adjusting and making mistakes.  But does he really have celiac disease?  We do not know and he refuses to do a challenge.  Feeling good trumps feeling sick.  Me?  I went in for a routine colonoscopy (yep, I am over 50) 12 years after my hubby went Gluten free.  My GI looked at my chart and noted my life-long issues with amenia.  I have two kinds of anemia (one is genetic).  The iron-deficiency anemia is what my GI noted.  Despite repeated supplementation, I still had it even after going through menopause.  He ordered a full celiac antibodies panel.  He scoped  me from both ends and found intestinal villi damage.  No disputes.  FOR SURE.  And I needed that diagnosis because I did not have GI issues at the time and worse yet, I knew exactly how a gluten free diet was going to impact my lifestyle.  You bet I was in denial, but the lab results do not lie.   My hubby would be the first to tell you that I get more support from family, friends and medical staff.  They believe me.  Him?  Some doubt (but we know better).  With my diagnosis, I was able to get the full celiac panel for my daughter and  have her thyroid monitored).  No fighting with her doctor or insurance because celiac disease is definitely genetic.    Two months into my diagnosis, I fractured my back doing NOTHING.  Yep, I had osteoporosis thanks to celiac disease.  It has been easy to get vitamin deficiency tests, bone scans, etc.  because I have a diagnosis.  Even my new GI has been supportive especially since I gave him hard copies of everything for the past 20 years with a summary cover sheet.   The cold?  My SIL was always cold.  Her thyroid was and is fine.  Now she went through menopause.  She is always hot now.  Having flashes, wearing light layers and even wearing her hair up.  So, you might have to wait a few decades. 😆 to get relief. The problem with autoimmune issues is that symptoms often overlap.  My doctor and I suspect  another AI issue, but what am I going to do? Take drugs?  No.  So I just keep moving forward.  That is something else to consider.  Just keep in mind your family history and get tested if needed.   You know your particular set of health circumstances.  Only you and your doctors can make the best course of treatment for YOU.    
    • If the company says it's gluten-free on it's website, what do you think  they will say that is different if you call?  The gluten-free drug list is just a partial list of gluten-free drugs.  There is no way he can check on every prescription and OTC medicine.  The fact that the manufacturer knows enough to put it on the website is great!
    • Can anyone tell me if Finasteride is gluten free? It is not on the Gluten Free Drug list but the website states that it is gluten free. I will call the manufacturer on Monday but for the time being does anyone know or take Finasteride? Thank you for your assistance.    
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