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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Can Celiac Cause Dysautonomia
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I have been suffering from autonomic dysfunction for 3 months now. 7 weeks of this was spent in hospital extremely unwell and the cause has not been found. They suspect the form I have to be postural orthostatic tachycardia syndrome (POTS). This can be an illness on its own or caused by something (secondary). On the wikpedia website it says that celiac has to be ruled out (amongst several others) before a diagnosis can be made. I was diagnosed with celiac disease in may this year. Whilst I was in hospital a blood test was done but was normal, but because I am B12 deficient, folic acid deficient and have a serum iron count of 8 they done a endoscopy and concluded from biopsies that I have celiac disease. They also found an adrenal mass but said its not functioning so will just scan next year to see if it's grown.

Does anyone have any advice or experience regarding this. I have also read various literature on the internet stating that celiac can manifest as neurological problems. I am new to all this and would appreciate any input. I am following a strict gluten free diet and have been since my dx, I have improved but am unsure whether this is due to the diet or steroids I was put on (i'm taking fludrocortisone - for poss POTS and adrenal probs!!!).

I have not read the biopsy report and am awaiting a copy. My bowels are more or less back to normal now. Some of the symptoms I was experiencing were/are: chest pain, tachycardia, palpatations, t-wave inversion (all cardiac tests were fine, echo, stress echo, treadmill test), sweating, orthostatic intolerence, severe weakness, nausea, diahrrea, hypoglycemic episodes......

Kind Regards

Eve

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B12 deficiency can cause neurological problems itself. How are your B12 and folic acid levels now? Are you getting B12 injections or taking folci acid supplements?

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I have been suffering from autonomic dysfunction for 3 months now. 7 weeks of this was spent in hospital extremely unwell and the cause has not been found. They suspect the form I have to be postural orthostatic tachycardia syndrome (POTS). This can be an illness on its own or caused by something (secondary). On the wikpedia website it says that celiac has to be ruled out (amongst several others) before a diagnosis can be made. I was diagnosed with celiac disease in may this year. Whilst I was in hospital a blood test was done but was normal, but because I am B12 deficient, folic acid deficient and have a serum iron count of 8 they done a endoscopy and concluded from biopsies that I have celiac disease. They also found an adrenal mass but said its not functioning so will just scan next year to see if it's grown.

Does anyone have any advice or experience regarding this. I have also read various literature on the internet stating that celiac can manifest as neurological problems. I am new to all this and would appreciate any input. I am following a strict gluten free diet and have been since my dx, I have improved but am unsure whether this is due to the diet or steroids I was put on (i'm taking fludrocortisone - for poss POTS and adrenal probs!!!).

I have not read the biopsy report and am awaiting a copy. My bowels are more or less back to normal now. Some of the symptoms I was experiencing were/are: chest pain, tachycardia, palpatations, t-wave inversion (all cardiac tests were fine, echo, stress echo, treadmill test), sweating, orthostatic intolerence, severe weakness, nausea, diahrrea, hypoglycemic episodes......

Kind Regards

Eve

It certainly sounds reasonable. Though I've never had it called autonomic dysfunction, I've had many of the symptoms over the years, especially orthostatic hypotension. One thing to look out for: I continued having it after going gluten-free. Many celiacs suffer from other food sensitivities. I suspect that mine include casein (dairy). You may want to ask for a referral to an allergist for testing, or give up dairy to be on the safe side. Supposedly, up to half of celiacs are casein-sensitive. Regardless, welcome to the board, and I sincerely hope that you've found your answer.

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B12 deficiency can cause neurological problems itself. How are your B12 and folic acid levels now? Are you getting B12 injections or taking folci acid supplements?

Hi Trents thank you for your reply.

My last check on B12 showed it was now 336. I have recieved B12 via injection and have been on folic acid for many months and my levels are near normal. I have also been taking ferritin for many months to.

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It certainly sounds reasonable. Though I've never had it called autonomic dysfunction, I've had many of the symptoms over the years, especially orthostatic hypotension. One thing to look out for: I continued having it after going gluten-free. Many celiacs suffer from other food sensitivities. I suspect that mine include casein (dairy). You may want to ask for a referral to an allergist for testing, or give up dairy to be on the safe side. Supposedly, up to half of celiacs are casein-sensitive. Regardless, welcome to the board, and I sincerely hope that you've found your answer.

Thank you for your post.

I suspected I had a issue with milk whilst in hospital, every morning I would try and eat some cereal and I ended up really nauseas, so I changed my breakfast and this improved. Now I am not having much dairy products at all. I will ask for testing to check for this. I did have allergy testing by a homeopath which involved touching a bottle and and if she recieved 'energy' from me a metal rod would move indicating to her whether I could tolerate the product or not. I am unsure whether this method was accurate!!!

Autonomic dysfunction is mainly catagorised as dysautonomia. This involves most bodily functions that are carried out automatically (heart rate, bp, temperature control, breathing, orthostatic intolerence, etc) by our autonomic nervous system. I am suspected as having POTS but my bp doesn't drop it actually rises!!! I am hoping gluten was causing these symptoms and that avoiding them (strictly) will help me.

I am enjoying exploring this board it is very helpful especially for the newlydiagnosed like me.

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Before I found out that I had Celiac, I thought that my dysautonomia was due to mitral valve prolapse (which I have), but I now believe that it's caused by years of undiagnosed celiac and the valve irregularities as well.

Fish oil supplements, magnesium, and calcium work well for me as a general treatment for my neurological problems.

I stopped eating dairy products made from cow's milk several years ago, but recently started having goat's milk products, and have had none of the problems that cow's milk gave me in the past. It's a whole different animal, lol.

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Before I found out that I had Celiac, I thought that my dysautonomia was due to mitral valve prolapse (which I have), but I now believe that it's caused by years of undiagnosed celiac and the valve irregularities as well.

Fish oil supplements, magnesium, and calcium work well for me as a general treatment for my neurological problems.

I stopped eating dairy products made from cow's milk several years ago, but recently started having goat's milk products, and have had none of the problems that cow's milk gave me in the past. It's a whole different animal, lol.

Hi,

What symptoms did you have from dysautonomia? and do you still have them now?

I will try the supplements many thanks for your advice.

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I too have had issues with tachycardia, sob and a drop in bp when I stand up. The few cardiac tests I have had are normal. I believe this is related to my iron deficiency or low iron stores (ferritin) which I am exploring now as it can have side effects with or without anemia. I am now looking into trying to get an iron infusion to help with my symptoms. At one time I thought I might have POTS or innappropriate tachycardia before I found out about my low iron and celiac and am convinced that it is the latter.

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Hi,

What symptoms did you have from dysautonomia? and do you still have them now? I will try the supplements many thanks for your advice.

When it was at it's worst, I had intense panic attacks with gastro problems that were way beyond what I thought was "IBS". I felt like I was going to have a heart attack, and feelings of impending doom as well. Cold sweating, heart palpitation, swings in BP, extreme fatigue and weakness were symptoms - even at bedtime. Most of these symptoms have been substantially reduced, and in come cases eliminated.

Another neurological symptom was a feeling of being stuck with pins, especially in my feet/toes, but also in other areas such as arms and hands. I believe that this was a neurological symptom of Celiac, as well. I've had this for as long as I can remember, and still do. I'm used to it and it's not a cause of extreme discomfort.

There were other problems, including almost constant anxiety.

I had very low Iron, and ferritin levels were zero. I am fortunate that my wife found out about Celiac about five years ago (the anemia was a tip-off), because until then we thought that the dysautonomia and gastro problems were a result only of Mitral Valve Prolapse Syndrome. I now know that it was both conditions.

Magnesium deficiency is very common in people with Mitral Valve Prolapse, and Celiac as well.

Gluten Intolerance expert Ron Hoggan, author of Dangerous Grains, uses magnesium for rebuilding bones, and recommends it as the most important supplement for Celiac Disease.

http://www.celiac.com/articles/640/1/Magne...ggan/Page1.html

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I second the notion of magnesium. I didn't realize how important it was or how deficient I was until I read "The Miracle of Magnesium" by Dr. Carolyn Dean. I followed her advice and am seeing the benefits especially in my blood pressure.

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I too have had issues with tachycardia, sob and a drop in bp when I stand up. The few cardiac tests I have had are normal. I believe this is related to my iron deficiency or low iron stores (ferritin) which I am exploring now as it can have side effects with or without anemia. I am now looking into trying to get an iron infusion to help with my symptoms. At one time I thought I might have POTS or innappropriate tachycardia before I found out about my low iron and celiac and am convinced that it is the latter.

Thank you for your reply. I to am looking into the effects of low ferritin and have found many people who have suffered symptoms from this. My bp does not drop it actually rises extremely on standing, my symptoms included severe weakness to the extent I could not tolerate being upright for more than several minutes before my weakness increased and chest pains become worse - being made to be upright by A & E staff caused me to have a T - wave inversion, sweating, extreme nausea, dizziness and many more. Orthostatic intolerence is poorly understood even by many medical professionals. I am relieved that this symptom has eased greatly and hope that it does not reoccur.

Have your symptoms improved? I hope you have gained relief from them. x

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When it was at it's worst, I had intense panic attacks with gastro problems that were way beyond what I thought was "IBS". I felt like I was going to have a heart attack, and feelings of impending doom as well. Cold sweating, heart palpitation, swings in BP, extreme fatigue and weakness were symptoms - even at bedtime. Most of these symptoms have been substantially reduced, and in come cases eliminated.

Another neurological symptom was a feeling of being stuck with pins, especially in my feet/toes, but also in other areas such as arms and hands. I believe that this was a neurological symptom of Celiac, as well. I've had this for as long as I can remember, and still do. I'm used to it and it's not a cause of extreme discomfort.

There were other problems, including almost constant anxiety.

I had very low Iron, and ferritin levels were zero. I am fortunate that my wife found out about Celiac about five years ago (the anemia was a tip-off), because until then we thought that the dysautonomia and gastro problems were a result only of Mitral Valve Prolapse Syndrome. I now know that it was both conditions.

Magnesium deficiency is very common in people with Mitral Valve Prolapse, and Celiac as well.

Gluten Intolerance expert Ron Hoggan, author of Dangerous Grains, uses magnesium for rebuilding bones, and recommends it as the most important supplement for Celiac Disease.

http://www.celiac.com/articles/640/1/Magne...ggan/Page1.html

I am glad your symptoms are less now when they were in full swing you must have suffered greatly. I am truly amazed at how gluten can effect our bodies it was something I never gave a thought to before I was diagnosed!! I will try to find out what my magnesium levels are and will consider taking theses as a supplement.

Thanks for the link I will read with interest.

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Hi Trents thank you for your reply.

My last check on B12 showed it was now 336. I have recieved B12 via injection and have been on folic acid for many months and my levels are near normal. I have also been taking ferritin for many months to.

I would not expect this to be a problem since you are getting B12 injections but just for your information and future reference folic acid supplementation will mask B12 deficiency.

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"Gluten Intolerance expert Ron Hoggan, author of Dangerous Grains, uses magnesium for rebuilding bones, and recommends it as the most important supplement for Celiac Disease."

Whenever I try Magnesium supplementation I get the runs. Finally figured out it is the active ingredient in Milk of Magnesia.

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You could try the spray on magnesium oil.

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I would not expect this to be a problem since you are getting B12 injections but just for your information and future reference folic acid supplementation will mask B12 deficiency.

My doctor wants me to hold off the B12 injections now and see if my level holds. If I have been taking folic acid for about 6 months would that effect the b12 results, would they appear higher on testing?

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Good question and I don't know the exact answer but I do know folic acid is water soluble. I would think it would be leached from the system rather quickly. That's why you don't have to be as careful with water soluble vitamin supplementation as you do fat soluble vitamin supplementation because the water soluble ones don't remain behind in the body's tissues. I would still ask your doctor or a professional dietician or a naturopathic physician for a definitive answer. Can anyone out there shed light on this question?

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I have been suffering from autonomic dysfunction for 3 months now. 7 weeks of this was spent in hospital extremely unwell and the cause has not been found. They suspect the form I have to be postural orthostatic tachycardia syndrome (POTS). This can be an illness on its own or caused by something (secondary). On the wikpedia website it says that celiac has to be ruled out (amongst several others) before a diagnosis can be made. I was diagnosed with celiac disease in may this year. Whilst I was in hospital a blood test was done but was normal, but because I am B12 deficient, folic acid deficient and have a serum iron count of 8 they done a endoscopy and concluded from biopsies that I have celiac disease. They also found an adrenal mass but said its not functioning so will just scan next year to see if it's grown.

Does anyone have any advice or experience regarding this. I have also read various literature on the internet stating that celiac can manifest as neurological problems. I am new to all this and would appreciate any input. I am following a strict gluten free diet and have been since my dx, I have improved but am unsure whether this is due to the diet or steroids I was put on (i'm taking fludrocortisone - for poss POTS and adrenal probs!!!).

I have not read the biopsy report and am awaiting a copy. My bowels are more or less back to normal now. Some of the symptoms I was experiencing were/are: chest pain, tachycardia, palpatations, t-wave inversion (all cardiac tests were fine, echo, stress echo, treadmill test), sweating, orthostatic intolerence, severe weakness, nausea, diahrrea, hypoglycemic episodes......

Kind Regards

Eve

I have almost IDENTICAL symptoms to you!!!!! I am so glad to know I am not the only one. I have held the belief that celiac was causing my problems but no doctor has been able to confirm that. Please e-mail me to talk--I would love to hear from you!!! (taraweaver32@yahoo.com)

~Tara

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"Gluten Intolerance expert Ron Hoggan, author of Dangerous Grains, uses magnesium for rebuilding bones, and recommends it as the most important supplement for Celiac Disease."

Whenever I try Magnesium supplementation I get the runs. Finally figured out it is the active ingredient in Milk of Magnesia.

Zinc, Calcium, and Vitamin D are all critical for metabolism of Magnesium, especially Calcium. Try a combined supplement.

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I have been suffering from autonomic dysfunction for 3 months now. 7 weeks of this was spent in hospital extremely unwell and the cause has not been found. They suspect the form I have to be postural orthostatic tachycardia syndrome (POTS). This can be an illness on its own or caused by something (secondary). On the wikpedia website it says that celiac has to be ruled out (amongst several others) before a diagnosis can be made. I was diagnosed with celiac disease in may this year. Whilst I was in hospital a blood test was done but was normal, but because I am B12 deficient, folic acid deficient and have a serum iron count of 8 they done a endoscopy and concluded from biopsies that I have celiac disease. They also found an adrenal mass but said its not functioning so will just scan next year to see if it's grown.

Does anyone have any advice or experience regarding this. I have also read various literature on the internet stating that celiac can manifest as neurological problems. I am new to all this and would appreciate any input. I am following a strict gluten free diet and have been since my dx, I have improved but am unsure whether this is due to the diet or steroids I was put on (i'm taking fludrocortisone - for poss POTS and adrenal probs!!!).

I have not read the biopsy report and am awaiting a copy. My bowels are more or less back to normal now. Some of the symptoms I was experiencing were/are: chest pain, tachycardia, palpatations, t-wave inversion (all cardiac tests were fine, echo, stress echo, treadmill test), sweating, orthostatic intolerence, severe weakness, nausea, diahrrea, hypoglycemic episodes......

Kind Regards

Eve

My heart palpitations and tachycardia are directly tied to a combination of a soy allergy which developed secondary to presentation of celiac disease symptoms and the actual reaction I have to gluten itself. The very last cardiac test I had done (prior to my celiac disease diagnosis) was another full stress test with the dye injection and gamma radiation timelapse bloodflow imaging. Everything (once again) came out normal. Since going completely gluten and soy free (including soy lecithin) I have had not a single cardiac related abnormality. My last checkup had my BP completely normal (standing, resting, and sitting) and my resting heartrate was a nice even 67. At one point it was 90.

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I was diagnosed with Primary Dysautonomia (Idiopathic Orthostatic Hypotension) first, it was a huge battle. I wonder if the Celiac and Dysautonomia are directly connected?

I have been suffering from autonomic dysfunction for 3 months now. 7 weeks of this was spent in hospital extremely unwell and the cause has not been found. They suspect the form I have to be postural orthostatic tachycardia syndrome (POTS). This can be an illness on its own or caused by something (secondary). On the wikpedia website it says that celiac has to be ruled out (amongst several others) before a diagnosis can be made. I was diagnosed with celiac disease in may this year. Whilst I was in hospital a blood test was done but was normal, but because I am B12 deficient, folic acid deficient and have a serum iron count of 8 they done a endoscopy and concluded from biopsies that I have celiac disease. They also found an adrenal mass but said its not functioning so will just scan next year to see if it's grown.

Does anyone have any advice or experience regarding this. I have also read various literature on the internet stating that celiac can manifest as neurological problems. I am new to all this and would appreciate any input. I am following a strict gluten free diet and have been since my dx, I have improved but am unsure whether this is due to the diet or steroids I was put on (i'm taking fludrocortisone - for poss POTS and adrenal probs!!!).

I have not read the biopsy report and am awaiting a copy. My bowels are more or less back to normal now. Some of the symptoms I was experiencing were/are: chest pain, tachycardia, palpatations, t-wave inversion (all cardiac tests were fine, echo, stress echo, treadmill test), sweating, orthostatic intolerence, severe weakness, nausea, diahrrea, hypoglycemic episodes......

Kind Regards

Eve

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I, too have orthostatic intolerance. It and my severe brain fog are my major symptoms. I've been on an elimination diet (nothing but rice/olive oil/grilled chicken) for 5 days now but things seem steady or possibly worse. I think it could be gluten/casein withdrawal.

Anyone here successfully conquer their orthostatic symptoms by eliminating certain foods?

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Hm...I get very dizzy upon standing at least once a day, but I have absurdly high iron (serum ferritin in the 250s--I'm waiting for a phlebotomy). I'll look into this further, but I'd love to know if its a celiac thing.

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    • 7Hi jen and welcome No-one can diagnose remotely via nterwe  posts but if there was such a game as celiac / gluten sensitive bingo, I would be calling 'House!' having read your account above... Lots of things fit the pattern as I'm sure your lurking has revealed.  It's a tricky condition to diagnose however so you may have a little wait before you join the coolest club in town and get your funky celiac membership card For now it's really important  that you stay on gluten. Keep eating it as accurate testing requires it. Ask your doctor to check the boxes for celiac testing alongside your liver blood tests. There should be enough in your history to get this without hassle but if they're reluctant INSIST and don't be afraid to assert your reasonable suspicion and wish to clarify and exclude. A good liver specialis will be aware of the possible links so you should be ok. If not gt second opinion. Ask for a full celiac panel as there are variety of tests. Find further info here There's a lot to take in,  but be positive, I think you are on the right track and if so, you could soon be feeling better than you ever thought possible!
    • Hello,  I am in a job that I travel every 3rd week...It gets challenging becuase many times I am doing audits of warehouses and they dont even have a cafeteria.  I usually bring gluten-free protein bars as a back up if I have to miss a meal and then eat when I get back to the hotel.  Just a suggestion because they certainly fill me up....Have a safe trip...Kelly  
    • Hello all, I'm a new member here but have lurked for a while. I'm looking for some advice regarding my medical history, possible symptoms of celiac and next steps. General info: female, low level smoker, drink alcohol, aged 32. I started having bad gastro issues when I was around 17. Since then I've consistently suffered from chronic diarrhoea, frequent discomfort in the tummy area, feelings of dehydration despite drinking at least eight glasses a day and frequent fatigue for no real reason.  In 2008/9 I visited the doctor as my diarrhoea was having an effect on my studies at the time. The doctor tested me for allergies; eggs, fish, gluten and lactose and did a "standard" blood test. Everything came back fine except my liver results, which were elevated to double (I did not the see the results for myself so can't say which enzymes etc). I was told to drink less and take Imodium. The doctor implied that perhaps I was stressed and / or anxious and, still being young plus a student who regularly went out drinking, I accepted this advice and carried on with my life.  I would here add that I am not an unusually stressed person - in fact, learning to deal with my unpredictable bowels has forced me to be quite a laid-back person!  Fast forward to 2016. I had been living with my partner for two years by this point who had noticed my bowel habits and informed me that this was definitely not normal. He encouraged me to try out a gluten free diet since I was apprehensive about visiting a doctor only to be fobbed off with Imodium again. I did the diet as strictly as a newbie can for around two months before we set off travelling. During the diet I noticed that after a couple of weeks of extreme tiredness I felt quite a lot better - I kept a food journal at the time which showed that I almost immediately had diarrhoea once after eating an ice-cream, i felt bloated and unwell after an attempt to make oat muffins (maybe i didn't cook them very well though!) and I felt bloated and had diarrhoea after eating some fish fried in flour (We made a mistake in ordering them but I didn't want to complain). My partner also reported that my mood swings (which I admit can be a little unpredictable) were much better.  Once we started travelling I gave up and ate what I was given as we were staying with friends etc much of the time. Toward the end of our trip I started to feel extremely tired, to the point of having to stay in for "rest" days, and my guts were very unhappy. I chalked it up to irregular eating patterns, too many beers and late nights in general. During the trip I also had an extreme hangover after drinking wheat beer. And, while of course I accept that any overindulgence can make you ill, I really felt that that level of hangover was quite out of the ordinary. Finally, I developed a strange lump under my armpit during this period. Now back at home, I decided to go to the doc and check out the odd lump under my armpit. The doctor was pretty confident that it was nothing to worry about cancer-wise but she ordered a battery of blood tests just to be sure. The lump is fine (good news) but the results showed elevated GGT, high-ish ALT and normal AST liver enzymes plus signs of dehydration in red bloods / higher (but not concerning) levels of white bloods. I'm scheduled to go back for another blood test to double-check liver function and discuss results - if it is again high she will send me for a ultrasound.  Does this history chime with anyone here? I know that the correct course in basic health terms is to stop drinking for some time (easily done) and stop smoking forever (easy to say...) but I cannot help but think that something else is going on here. I will discuss this with my doctor and make clear that my bowel issues have not been resolved and that the initial IBS diagnosis wasn't based on any thorough testing so to speak. In the meantime - does anyone have any advice for me in times of avenues to research or experience of similar symptoms? Gluten remains in my diet but in all other respects it could be regarded as very healthy, I think anyway... (pescatarian, plenty of fruit and veg, little to no sugar on a daily basis, not much dairy to speak of...) Thanks in advance and sorry for bending everyone's' ear about this... I guess it's just taken a long time for me to admit I might be sick and I need some help. Jen
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    • It is too bad that so often a full panel isn't done. Glad your appointment got moved up and hopefully you will get a clearer answer from the GI. Do keep eating gluten until the celiac testing is done.  Once the testing is done do give the diet a good strict try. Hang in there.
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