celiac disease is psychosomatic

[sella]

I read a summary report a doctor wrote about me. I thought doctors were more knowledgeable about celiac disease these days, but I guess not. The doctor diagnosed me with psychosomatic disorder when I told her the symptoms (including anxiety since the intestines regulate this) I had from years of undiagnosed celiac disease that affected my ablity to function. Please let me know if you had any disabling symptoms. I have heard stories of how others felt like they were dying. I felt the same way. I didn't mention that I felt like I was dying to my doctor, though. I just can't believe she thought my symptoms from celiac disease were all in my head like celiac disease isn't a real disease.

[Estes]

Unfortunately I feel this may be common.  For 6 years I was told I was fine.  Lungs fine, chest fine, just anxiety.  It was not until I pressed the anemia issue that I got a blood test.  Now I am a bit of a squeaky wheel to my doctor.  She referred me to Mayo Clinic in Rochester MN which has a celiac center.  I will meet with Dr. Murray (who is a leader in celiac research) next Friday.  If nothing else, you could always come to Mayo Clinic.

[kareng]

1 hour ago, sella said:

I read a summary report a doctor wrote about me. I thought doctors were more knowledgeable about celiac disease these days, but I guess not. The doctor diagnosed me with psychosomatic disorder when I told her the symptoms (including anxiety since the intestines regulate this) I had from years of undiagnosed celiac disease that affected my ablity to function. Please let me know if you had any disabling symptoms. I have heard stories of how others felt like they were dying. I felt the same way. I didn't mention that I felt like I was dying to my doctor, though. I just can't believe she thought my symptoms from celiac disease were all in my head like celiac disease isn't a real disease.

Were you officially diagnosed with Celiac Disease at the time she wrote that?  And, if so, for how long were you diagnosed & gluten-free but still complaining of those symptoms?

[DebNC84]

If you don't get the diagnosis you are happy with go to another doc.  Try to find a Celiac Friendly doc.  OR you can do what i did and give up and just go gluten free.  I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac.  AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test.  INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results.  I didn't have hashimotos to put it bluntly.   I am almost 10 years gluten free with no positive Celiac diagnosis.  But let me tell you this,  My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac.  so.  js.     That's my story..  in short.

[sella]

I was diagnosed a couple years ago and started gluten-free diet then. Test also showed damage to my small intestine. I explained to this doctor how I was barely able to get out of bed when I ate gluten in the pastand my intestines are still recovering from the damage. I only discussed this briefly. I consulted with this doctor concerning my dizziness explaining that I get dizzy/migraines when I eat gluten due to my celiac disease. I further explained that my dizziness has been cut in half since I went on a gluten-free diet so I am better able to get out of bed. The consult was about taking tests to figure out if something in my brain was causing my dizziness or this doctor specialized in testing the brain for impairments. In her summary, she stated that my memory impairments were probably due to being precoccupied with thinking about my psychosomatic symptoms. However, I only though about the test when I took it. And I only think about whatever task I am trying to remember when I try to remember it! I feel my symptoms rather than think about them all day long.

[frieze]

CoQ10 def. can cause balance issues.   your doctor was an ass.

 

[Stacycheerou]

22 hours ago, DebNC84 said:

If you don't get the diagnosis you are happy with go to another doc.  Try to find a Celiac Friendly doc.  OR you can do what i did and give up and just go gluten free.  I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac.  AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test.  INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results.  I didn't have hashimotos to put it bluntly.   I am almost 10 years gluten free with no positive Celiac diagnosis.  But let me tell you this,  My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac.  so.  js.     That's my story..  in short.

Did they figure out what was causing your rash? My sister and I have both developed severe hives about 9 months after going gluten free after we both discovered we had celiacs. I have been to my GP and an allergist and I have not been able to get ANY answers as to what is causing my hives.  I think it's odd we are both suffering from hives.  She loves in Hawaii I live in South Carolina so we are exposed to completely different environments so I am thinking it is diet related. 

[sella]

Sometimes I develop rashes, but not on a regular basis. I think celiacs have varying symptoms. But I heard how someone else with celiac often develops these strange rashes. It's probably due to ingesting hidden gluten. Food products don't always label gluten.

[cyclinglady]

1 hour ago, Stacycheerou said:

Did they figure out what was causing your rash? My sister and I have both developed severe hives about 9 months after going gluten free after we both discovered we had celiacs. I have been to my GP and an allergist and I have not been able to get ANY answers as to what is causing my hives.  I think it's odd we are both suffering from hives.  She loves in Hawaii I live in South Carolina so we are exposed to completely different environments so I am thinking it is diet related. 

After my glutening in July, I had new weird symptoms, including hives and rashes.  Have you researched Histamine Intolerance or Mast Cell Activation Syndrome?  Most doctors are not aware of these.  

[DebNC84]

 

1 hour ago, Stacycheerou said:

Did they figure out what was causing your rash? My sister and I have both developed severe hives about 9 months after going gluten free after we both discovered we had celiacs. I have been to my GP and an allergist and I have not been able to get ANY answers as to what is causing my hives.  I think it's odd we are both suffering from hives.  She loves in Hawaii I live in South Carolina so we are exposed to completely different environments so I am thinking it is diet related. 

My rash was caused by gluten. the rash is called dermatitis herpetiformis (DH) - it's presentation varies. Sometime like hives, sometimes one single lesion, always intensely itchy and get's worse at night. 

  I went gluten free and the rash stopped itching and started healing.  But ANY slip ups with accidental  ingestion of gluten caused a re-appearance of the dreaded itch and rash.  I don't know all the technical terms but it takes a long time 6 mos to a year for the gluten to get out of your blood stream.

 Studies show that only 20% of celiacs get DH and those lucky souls are actually MORE sensitive to gluten than the rest.  So it's possible that you and your sister are still getting trickles of gluten from products that are not FREE of gluten but labeled gluten free.  You know the FDA only requires 20 ppm or less of gluten.  that's enough to trigger my system to react.  

also search about the use of iodine reacting with gluten causing DH - i avoided raw sea salt for years because of that.   I hope this helps.  

[Sheena]

I suffered for 10 years before finally getting a definitive celiac diagnosis. All my doctor had to do was give me a simple blood test and he would have seen my numbers were through the roof, but instead he diagnosed me with anxiety and ibs and wouldn't hear about anything else even when I told him my sister had celiac. 

By the time I was diagnosed I had chronic fatigue, fogginess, anxiety, depression, diarrhea and terrible stomach cramps, face and chest rash, stuttering, etc. I regret not standing up for myself more.....once he had an opinion about my mental health (anxiety) he couldn't let it go and just assumed I was a hypochondriac. I started to believe it myself. Thank god my family finally convinced me to demand the test! 

Long story short, trust your instincts and always stand up for yourself. 

[sella]

I'm mad that doctors aren't more educated about the symptoms celiac disease causes. Or they think it only causes diarrhea. I had other symtoms instead of diarrhea.

[Gemini]

8 hours ago, Stacycheerou said:

Did they figure out what was causing your rash? My sister and I have both developed severe hives about 9 months after going gluten free after we both discovered we had celiacs. I have been to my GP and an allergist and I have not been able to get ANY answers as to what is causing my hives.  I think it's odd we are both suffering from hives.  She loves in Hawaii I live in South Carolina so we are exposed to completely different environments so I am thinking it is diet related. 

Hives can be caused by so many things but primarily, it's either allergy related or autoimmune related.  You can have autoimmune hives which can result from having one or more AI diseases.  I get hives but mine pop when it gets warm and wet......I am severely allergic to molds. They just about appear and disappear quickly, if the weather goes from wet to dry. I use Benadryl to keep them from getting too bad, when needed. I also use children's Benadryl because it works just as well as the adult formula but makes me less drowsy.

You can be more susceptible to environmental allergies when you have Celiac.  Is this a problem for you and your sister? 

[Gemini]

7 hours ago, sella said:

Sometimes I develop rashes, but not on a regular basis. I think celiacs have varying symptoms. But I heard how someone else with celiac often develops these strange rashes. It's probably due to ingesting hidden gluten. Food products don't always label gluten.

If a food product contains wheat, it must be labeled by law. I have been gluten-free for 11 years and have found that this whole concept of hidden gluten (aside from cc) is really not quite true.  You have to learn how to read labels correctly to identify what is in the food you are eating.  If in any doubt, do not eat the product until further inquiry is made.

Rashes happen for many different reasons but they do seem to occur more frequently in those with autoimmune or allergy problems.  Those would probably be the 2 main causes of them. It can be incredibly hard to figure out and doctors are not much better at helping.  This is why my 89 year old MIL is trying a gluten-free diet because she is having rash and itching problems that are driving her crazy. No help whatsoever from doctor-land.  They just keep feeding her prednisone and that is not a good choice for anyone, never mind an 89 year old.  It's a wonder any of us get the help we need!

[sella]

It is true about hidden guten. I have seen news reports that even products claiming to be gluten-free often times contain traces of it. For example, there is gluten in several gluten-free probiotic brands. So, I have been considering not taking probiotics.

[kareng]

1 hour ago, sella said:

It is true about hidden guten. I have seen news reports that even products claiming to be gluten-free often times contain traces of it. For example, there is gluten in several gluten-free probiotic brands. So, I have been considering not taking probiotics.

Those are not food products. 

[sella]

As I stated, i have seen news reports about food products not listing trace amounts on gluten on labels. I wasn't referring to fresh produce.

[kareng]

3 hours ago, sella said:

As I stated, i have seen news reports about food products not listing trace amounts on gluten on labels. I wasn't referring to fresh produce.

Probiotics are not food products and are not governed by the same laws.  

 

[sella]

I know what food products are. Probiotics was a recent example I saw on the news about things labeled gluten free that were not gluten free. So, supplement labels in addition to food labels.

[Gemini]

22 hours ago, sella said:

It is true about hidden guten. I have seen news reports that even products claiming to be gluten-free often times contain traces of it. For example, there is gluten in several gluten-free probiotic brands. So, I have been considering not taking probiotics.

You are misunderstanding the term hidden gluten.  A food item, of which probiotics are not covered under, can legitimately have trace amounts of gluten and still be gluten free.  There is no test that can test down to zero, regardless of what you hear.  Most testing generally tests down to 5ppm and the vast majority........  most likely 99% of Celiac's, will not have an autoimmune reaction to the food.  I am an extremely sensitive, diagnosed Celiac and I eat some processed foods, from reputable companies, and I am doing phenomenal, 11 years gluten-free.  Lots and lots of other people have this experience also. This is not an example of hidden gluten.

There can be food ingredients that may be made from a gluten component that may not be as easy to distinguish but if you learn label reading as you should, with time you will be easily able to identify what is safe or something that is questionable. Can it be daunting at first to learn all this new information?  Absolutely, but if you can read, you can learn.

There are also many probiotics which are completely safe.  I have been taking them for 30 years and have never been glutened once from them.  The news reports (for what they are worth now) say that there was gluten discovered in probiotics.  That does not mean all probiotics are suspect. You can find out from the Gluten Free Watchdog which ones failed and which ones did not, then make your choice to buy.  Supplements are not covered under the food laws but again.....read those labels and check with manufacturers!

Open Original Shared Link   This is a pretty good page that explains it well.

 

[notme]

after nearly 6 years gluten free, i still have some balance/anxiety/neuro issues.  they're the last to leave the symptom party, i'm afraid.  i attribute this to the years and years i went undiagnosed and untreated (25 years~! )  i don't have much faith in the medical field's intelligence or in their ethics.

funny story:  my obgyn bill had a charge on it that my insurance denied - $25.00 for 'smoking cessation intermediate 5-8 min'  WHAAAAAT?!  (the doctor said it would be a good idea if i quit smoking.  i'm like 'no s$#&, sherlock')  called the billing office and told them i'm not paying it.  WHY?  1.  do you have any idea how much money i would owe my dad????!!!  2.  i don't smoke with my vagina.  they took off the charge

[sella]

I guess it's the "natural flavoring" which throws me off. It could or could not contain gluten and it's in so many products.

I haven't been on a gluten-diet for as long as you...6 years. I may have bee undiagnosed and untreated for more than 25 years since i had signs that went back to chidhood. Yes, I have balance/anxiety/neuro issues. I know anxiety is connected to damage in intestines, but I don't know for sure if celiac causes balance/neuro issues. I was already tested for brain ataxia, but I didn't get too far on that. Well, there wasn't an exact test, but the neurologist noted that I was walking straight or something on those grounds so I must not have it. I know studies have shown Transglutaminase 6 antibodies indicate gluten ataxia, butthat test is not yet available to the public.

 

[Gemini]

21 hours ago, sella said:

I guess it's the "natural flavoring" which throws me off. It could or could not contain gluten and it's in so many products.

I haven't been on a gluten-diet for as long as you...6 years. I may have bee undiagnosed and untreated for more than 25 years since i had signs that went back to chidhood. Yes, I have balance/anxiety/neuro issues. I know anxiety is connected to damage in intestines, but I don't know for sure if celiac causes balance/neuro issues. I was already tested for brain ataxia, but I didn't get too far on that. Well, there wasn't an exact test, but the neurologist noted that I was walking straight or something on those grounds so I must not have it. I know studies have shown Transglutaminase 6 antibodies indicate gluten ataxia, butthat test is not yet available to the public.

 

sella.........in 11 years gluten free, I have never been glutened by natural flavorings. I know some of the older literature on Celiac says it may contain gluten but they rarely do.  For more info, I have put in a link that briefly explains how it works with labeling for those.  The link is dated 2013 but I have yet to read any updates that list any pertinent changes to this.  It will take a few years or longer for a person with Celiac to really learn how to read a label to the point where they feel comfortable with eating that food but I guarantee you'll be a food expert!

Open Original Shared Link

As to your other question, yes, Celiac most certainly causes balance and neuro issues.  I suffered from extreme vertigo for years, which disappeared after being on the gluten-free diet for a while.  I had no idea it was connected to celiac disease but it completely disappeared on the diet.  I also never had anxiety issues but now, on the rare occasion I sustain a hit, the anxiety is bad.  It disappears after about a week.  This is well know to Celiac's but many doctors still don't get all the symptoms we suffer from, that are related to gluten ingestion.  Frustrating!

[Gemini]

22 hours ago, notme! said:

funny story:  my obgyn bill had a charge on it that my insurance denied - $25.00 for 'smoking cessation intermediate 5-8 min'  WHAAAAAT?!  (the doctor said it would be a good idea if i quit smoking.  i'm like 'no s$#&, sherlock')  called the billing office and told them i'm not paying it.  WHY?  1.  do you have any idea how much money i would owe my dad????!!!  2.  i don't smoke with my vagina.  they took off the charge

Thank you, Arlene, for making tea come out my nose!  I should have known not to read your post while drinking......

[sella]

Thanks, I'll check out the information in the link.

Do you remember how long you were on a gluten-free diet before your vertigo disappeared? I have been on the diet for 2 years, but I might be glutened from time to time since I am not an expert food label reader. My dizziness still persists.