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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.

Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga
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72 posts in this topic

Hi, I am new to these boards and am looking for some advice. I have been doing the Amazing doctor race for over 25 years now and the best anyone can come up with is Chronic Fatigue Syndrome / Fibromyalgia. I have been battling this illness for over 25 years now and I just need something to end. About every few years I see a new doctor who wants to figure out what I "really" have besides Fibro. They do some tests, send me to some specialists and all roads lead back to Fibromyalgia. UNTIL LAST WEEK.

I just moved to another state and started with a new Dr. A nurse practitioner with her doctorate in medicine and a well known diagnostician around here. So I went with intentions of getting back on Fibromylagia meds.

Rewind, about 3 1/2 years ago I was given a glimmer of hope for all my problems. Cymbolta. Yes, it helped. Made some of my joint pain go away, made me a little less angry. But that was about it. I lasted about a year and then I wanted to try and get pregnant again (I already have one child). So I had to go off it. Going off this medication really pin pointed the decline of my health. Two miscarriage after that and now I can't get pregnant after being able to get pregnant 5 times quick in my life. Fertility doctor has no answer despite my eggs being a little less great due to my age. But he said it is still possible. All my fertility tests normal.

Back to the new nurse practitioner. Of course, like so many, after seeing me for my initial visit, reading my thousands of medical records, listening to me list my host of one million symptoms from the past 25 years (chronic sleep deprivation, chronic fatigue, no memory, exercise intolerance, massive brain fog getting worse, chills that come and go, stomach bloating, chronic constipation, random bouts of IBS, unexplained weigh gain, thyroid cancer (fine now and levels are always fine), Wolf Parkinsons White (heart was ablated, fine now with that), eye swelling upon waking like an allergic reaction, massive scabs and head dandruff, pin and needles in feet and hands, arthritis in neck, chronic neck pain after injury, burning muscles and eyes after exertion, weird bladder issues, choliostatis of the liver when pregnant, muscle stiffness that is worse on awaking, chronic headaches plus migraines (sugar induced I think), weird chemical sensitives that come and go over the years, late puberty, miscarriage and infertility for no reason, loss of tooth enamel for no reason all of the sudden ( black on my tooth but dentist said loss of enamel, nothing else), stomach acid, cystic acne, irregular periods all of the sudden in the last few years, weird rashes and extreme itching for no reason, concentration issues, ringing in ears, eye twitching, eye sensitivity to light and night driving, hoarseness, muscle cramps, etc... And the list goes on), she decided she wanted to get to the bottom of "this Fibromylagia", and she actually used quotes with her fingers when she said it.

She looked at some older tests I have, said I had some slight elevated liver enzymes (I have had this for years and years), and wanted to send me for a stomach ultrasound. It came back fine. Nothing wrong. The she sent me for a host of blood work. Different panels, didn't tell me what they were. Went and came back for the results. She said again I have slightly elevated liver enzymes, slight elevated cholesterol level (which I had had before as well despite eating a low fat diet my whole life). She said I have an elevated cortisol level, she said it could be why I can't lose weight but I needed to see an endo for it. I also had a large vitamin D deficiency requiring prescription in a huge dose once a week. The she hits me with the whopper. She did something called a Celiac panel and I have Celiacs. If you want to live, you can't eat wheat. No gluten, ever again.

WHAT??? This women must have been out of her mind. Did she know who she was talking to? I am the carb queen. I live for it. Bagels, cereal, low fat cookies. No way lady, you must be wrong. There is no way I can stop eating that stuff. Quickly tears swelled up in my eyes. First I thought she was some holistic freak. Then I doubted it because no doctor has ever told me I had anything wrong with my blood work. I just didn't believe her. I left mad and sad. I went home to process.

Here we're my numbers....

Immunoglobulin A : 128 (normal, range 70-400)

Gliadin IGA Deamidated: 2.1 (normal, <20)

Transglutaminase IGA Autoabe: 20.8 (out of range <15.1)

I started reading and reading and reading. Could this really be? Could this be the answer I have been chasing for the past 25 years? I read more and started to wonder why she didn't advise me to go see a Gastro, the next obvious choice. She scared me. I immediately stopped gluten, just in case and to see what would happen. She said it would take time but maybe in two weeks I would have some relief. I researched, dropped $300 on gluten free products, bought every type of everything you could imagine, got schooled by another gluten free person, etc... I also immediately called her asking why she didn't recommend me for an upper endoscopy. She said she didn't need to, this is what I have. I asked her for a recommendation anyway. I had to know, I have to know. There is no way I can not know. I make the appointment for five days later and I go on my gluten free way. Five days of gluten free, maybe a little more clear but not so much difference. My stomach was doing circles, it's like my system didn't know what to do. I was in the bathroom straight for the first 24 hours, which is usually the opposite of what happens to me.

Five days later, I go to the 1st Gastro. His nurse practitioner sakes me some questions, takes my vitals and puts me in the Dr's office. The guy walks in, doesn't shake my hand or introduce himself, looks over my blood for two seconds, says I don't know if you really have this but I will do the test, signs me up and walks out. Five whole minutes this jerk spent with me and asked me nothing. He says, don't worry, you can eat gluten. It doesn't matter either way, it won't effect the test. I asked him about the liver and the vitamin D, he replies it has nothing to do with any of this. I leave with a endoscopy planned for a week from that day. I left feeling upset. I got home and decided this was not a doctor I wanted to give my money to nor is he a doctor I want doing a procedure one me. What happens if I don't have Celiacs and I still have to deal with this guy to help me find something else? No way.

I left and went to a dinner. I ate my first dose of gluten in form of two pieces of rye bread. Instant bloating. Wow, that's weird. I never even realized all these years that feeling in my stomach was bloating. I always just thought I could feel myself gaining weight every time I ate a carb. Lol. I continued that night with a bowl of ziti. It happened again. Wow. I went on to eat some cheese crackers before bed, just to see what would happen. Besides feeling like crap all day and exhausted (as usual), I woke in the morning with massive swelling under my eyes, like I had bee stings. Black circles with bee stings on top. You could see the blood vessels popping out. Stomach rumbling all the next day. Constipation comes back. I was shocked. Cold adding the gluten back in really make me feel something? I never in my life associated any of my pain or ailments with bread or pasta, never with gluten, I didn't even know what gluten was till five days ago. Wow! I decided from that moment on, no matter what, I NEVER WANT TO EAT GLUTEN AGAIN. It just didn't make me feel good. Since I added it back, my body is in what I call a "serious Fibromyalgia state". Eyes burning, body hurting, feels like I haven't slept in 10 years. My cognitive is so, so bad. Stomach is turning, bloated. And guess who just joined me? My hemmiroid decided to make an appearance all of the sudden. It's been a while but we reunite. Thanks!

I go home, get some good recommendations from family to a good Gasto. I go. He spends an hour with me, learning my case, listening to everything from the beginning. Checking all my blood. Says this is a possibility that I have Celiacs, he sees it more and more and if I don't have celiacs, I probably have a sensitivity to gluten. He tells me he wants to do the endoscopy but now that I ate gluten free for five days, he wants to be sure we don't skew the results and wants me to wait another two weeks. And here is the kicker... You must eat gluten the whole time. SERIOUSLY??? Oh God, I'm going to die!

I go home, cry some more, eat my gluten (and sneak in a few non-gluten things here and there, hope it's OK?) and now I wait. I am so anxious. This all makes so much sense. I can't stop researching and can't saying "WHAT If" "WHAT IF"??? What if this is my answer? What if this women is my savor? What if I have been poising myself and killing off my organs for 25 years and no one found it? What if???

That is why I come to this board, turning to people with I'm sure similar stories. I have endured so much. I have a sweet little five year old that is denied a functional mother. I have a great business that is suffering. I have a relationship with my husband that could be so much better. I have so much rage and anger and pain and I want there just to be an answer. Please, there has to be, please let this be it!

Opinions from my test results? I know it sounds like I have it from everything I'm saying but what about the blood? How likely is it that I have this?

Thanks for listening!!! I will post my endoscopy results here in two weeks, I promise. From the girl that couldn't imagine giving up "carbs" to the girl that is dying to, literally.

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Welcome!

 

Yes, you likely have Celiac Disease and you are not alone.  Unfortunately, many of us went undiagnosed, misdiagnosed or had our symptoms dismissed for years.   Might not seem like it right now, but that positive tTG-IgA may have saved your life....or at least has given you the opportunity to greatly improve your health.

 

I know it's frustrating, but do continue to eat at least one slice of glutenous bread per day until the endoscopy.

 

This second GI sounds better than the first...do make sure he plans to take enough samples of the small intestine.  6-8 is recommended as damage can be spotty.  Also, if he hasn't had them run....request tTG-IgG and DGP-IgG before you remove gluten....having complete starting data to compare is helpful when it comes to follow up blood work.

 

Request written copies of both procedural and pathology reports for the endoscopy.  Another good idea is to have the person waiting for you to ask the doctor what he saw as you will likely be too loopy to do so....I have found the doctor sometimes imparts more helpful info right after the procedure than what is found in the report.

 

Take this time to prepare for removing all gluten once the endoscopy is complete.  This thread can be very helpful:

 

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

Again, welcome to the best club you never wanted to join :)

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Welcome to the board. Your story is quite familiar to many of us. Keep on the gluten until your endo is done. After that is done you can go gluten free as long as no more celiac testing is needed. It isn't unusual for symptoms to become worse when you have been gluten free for even a short time and then add it back into your diet. No matter what the test results are your body is clearly telling you that you need to be gluten free. Hang in there and keep in mind it does take time to heal. Do be sure to read the Celiac 101 thread while you are waiting on the tests to be finished as what you need to do to be safe does go beyond just eating gluten free. It would also be a good idea to have your children screened periodically as Celiac is genetic and can be triggered at any point in a persons life.

I hope you are feeling better soon.

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....and if you are looking to add to your family, you will need to wait awhile....maybe a year?

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Thanks and good to know I should wait a year if I want to get pregnant again but I think that ship has sailed. We tried for the last 3 years and I'm turning 42 in a few weeks, my husband is 45. 

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Welcome!

 

Yes, you likely have Celiac Disease and you are not alone.  Unfortunately, many of us went undiagnosed, misdiagnosed or had our symptoms dismissed for years.   Might not seem like it right now, but that positive tTG-IgA may have saved your life....or at least has given you the opportunity to greatly improve your health.

 

I know it's frustrating, but do continue to eat at least one slice of glutenous bread per day until the endoscopy.

 

This second GI sounds better than the first...do make sure he plans to take enough samples of the small intestine.  6-8 is recommended as damage can be spotty.  Also, if he hasn't had them run....request tTG-IgG and DGP-IgG before you remove gluten....having complete starting data to compare is helpful when it comes to follow up blood work.

 

Request written copies of both procedural and pathology reports for the endoscopy.  Another good idea is to have the person waiting for you to ask the doctor what he saw as you will likely be too loopy to do so....I have found the doctor sometimes imparts more helpful info right after the procedure than what is found in the report.

 

Take this time to prepare for removing all gluten once the endoscopy is complete.  This thread can be very helpful:

 

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

Again, welcome to the best club you never wanted to join :)

What in all of this makes you say I most likely have it? Are you basing this on the test results or the symptoms or both? Which more? Thanks!

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Can anyone tell me what my numbers mean? The one positive test, is that a test that is usually positive in Celiacs? Am I just slightly elevated?

 

Immunoglobulin A : 128 (normal, range 70-400)
Gliadin IGA Deamidated: 2.1 (normal, <20)
Transglutaminase IGA Autoabe: 20.8 (out of range <15.1)

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I spoke to this new doctor I really like's partner in his office. He was pretty old and old school, I could tell. He was going over my blood work again on the phone with me today and goes, this is very unlikely that you have Celiacs. I said why do you say that. He says, you have no history of chronic diarrhea, just a little bit here and there...LOL. 

 

From everything I have read, there could be no symptoms or so many others, not just the text book ones, right? Chronic constipation can be the alternative from everything I have read. Don't these doctors all learn the same thing in school? This kind of stuff makes you want to hate main stream doctors.

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What in all of this makes you say I most likely have it? Are you basing this on the test results or the symptoms or both? Which more? Thanks!

 

Symptoms.  Your story is very familiar here, plus I had many of the same symptoms as you.   Below I've edited your post to symptoms I had for decades that became increasingly severe as time went on.  I had a few more that you didn't have which is common...there are over 300 symptoms associated with Celiac.  The problem is they are not specific to Celiac.  I also anemia, low vitamin D plus other nutrients, weakly positive tTG-IgA (I had stronger positives on IgG panel) and elevated liver enzymes ... my nutrient levels and liver enzymes all corrected slowly and were perfect by one and half years gluten-free.

 

symptoms from the past 25 years (chronic sleep deprivation, chronic fatigue, no memory, exercise intolerance, massive brain fog getting worse, chills that come and go, stomach bloating, chronic constipation, random bouts of IBS, unexplained weigh gain, eye swelling upon waking like an allergic reaction, pin and needles in feet and hands, arthritis in neck, chronic neck pain after injury, burning muscles and eyes after exertion, muscle stiffness that is worse on awaking, chronic headaches plus migraines (sugar induced I think), weird chemical sensitives that come and go over the years, late puberty, miscarriage and infertility for no reason, loss of tooth enamel for no reason all of the sudden, concentration issues, ringing in ears, eye twitching, eye sensitivity to light and night driving, hoarseness, muscle cramps, etc... And the list goes on), she decided she wanted to get to the bottom of "this Fibromylagia", and she actually used quotes with her fingers when she said it.

 

Fibromyalgia is a label given to a group of symptoms that can all be caused from nutrient malbsorption caused in Celiac Disease.  In my opinion, everyone diagnosed with an autoimmune disorder, especially "fibromyalgia" or CFS should be given a complete celiac antibody panel.

 

Call it "gut" instinct...I believe there is a very high likelihood that your endoscopy will find damage in your small intestine or your IgG antibody blood tests will provide more information.

 

If your endoscopy reveals nothing....you should still remove ALL sources of gluten to monitor symptom improvement.  That you already experienced a strong reaction to the five day trial is enough reason to remove gluten...even without your positive tTG, elevated liver enzymes and low vitamin D factored in to the equation.

 

Hang in there.

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Symptoms.  Your story is very familiar here, plus I had many of the same symptoms as you.   Below I've edited your post to symptoms I had for decades that became increasingly severe as time went on.  I had a few more that you didn't have which is common...there are over 300 symptoms associated with Celiac.  The problem is they are not specific to Celiac.  I also anemia, low vitamin D plus other nutrients, weakly positive tTG-IgA (I had stronger positives on IgG panel) and elevated liver enzymes ... my nutrient levels and liver enzymes all corrected slowly and were perfect by one and half years gluten-free.

 

 

Fibromyalgia is a label given to a group of symptoms that can all be caused from nutrient malbsorption caused in Celiac Disease.  In my opinion, everyone diagnosed with an autoimmune disorder, especially "fibromyalgia" or CFS should be given a complete celiac antibody panel.

 

Call it "gut" instinct...I believe there is a very high likelihood that your endoscopy will find damage in your small intestine or your IgG antibody blood tests will provide more information.

 

If your endoscopy reveals nothing....you should still remove ALL sources of gluten to monitor symptom improvement.  That you already experienced a strong reaction to the five day trial is enough reason to remove gluten...even without your positive tTG, elevated liver enzymes and low vitamin D factored in to the equation.

 

Hang in there.

 
Thank you Lisa. It's nice to hear someone that went through similar things. Maybe this at least will help me through the next two weeks.
 
I feel the same about Fibromyalgia and testing. In fact, if 1 out of 100 people have Celiacs and it causes so many bad problems and it's curable, why not just test kids when they are born or young automatically? I so feel this with every bit of me but I have to stay a sceptic because I have been wrong before and I don't want to get ahead of myself. When you were really sick, did you have any issues with exercise? That has been one of my biggest issues with all of this. I can't lose weight no matter what Weight Watchers plan I am on, etc... The only way I can even lose a pound is cutting out the carbs, never knowing that had anything to do with gluten). Exercise can also help only a little for me but the minute I exert myself even for 20 minutes of light walking on a tredmill, I feel ill all over with buring eyes and can't function for a week. It's like my whole immunie system is being attacked or something. It's been something so hard to explain to doctors and people, no one understands when you say "I get litterly sick from exercise". I personally love to work out, but at this point it is a love/hate relationship. I want to do what the guy or girl next to me is doing but if I did that, I would be sick for two weeks. Like I have the flu, minus the fever. I know everyone is different but I have been looking for years for someone that has the same reaction to exercise.
 
Also, the "tTG-IgG test", is that different from the "Transglutaminase IGA Autoabe" test in my results?
 
Thanks, Rachel
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Can anyone tell me what my numbers mean? The one positive test, is that a test that is usually positive in Celiacs? Am I just slightly elevated?

 

Immunoglobulin A : 128 (normal, range 70-400)

Gliadin IGA Deamidated: 2.1 (normal, <20)

Transglutaminase IGA Autoabe: 20.8 (out of range <15.1)

 

Immunoglobulin A (IgA) is a control test to make sure you make enough IgA for accurate IgA celiac based testing. About 5% of celiacs are deficient in IgA so thier tests are often false negatives. Your IgA looks just fine so your other tests should not be affected.

 

The gliadin IgA deaminated test is the DGP IgA, which is a newer and good celiac test. Yours is negative so you make not have celiac disease, but that test's sensitivity is only 82-96% which means it will miss 4-18% of all celiacs. See page 12 of this report for my source: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Your tTG IgA is positive. That test is 91-99% specific to celiac disease, which means that 1-9% of positive test results could be caused by something other than celiac disease. Usually when a patient falls into that 1-9% group, their results are a weak positive so there is a slim chance that you don't have celiac disease, but a 91-99% chance that you DO have celiac disease.  False negative tTG IgA tests can be caused by thyroiditis, crohn's, colitis, chronic liver disease, diabetes, or a serious infection. If it's not celiac disease (which it most likely is) then your doctor should be looking into these other causes.

 

It is not unusual for a celiac to have only some positive tests. I would say that at least haf fall into that category. And then there are many who have negative blood tests but a positive biopsy and vice cersa -  we all have celiac disease though.

 

Doctors only look at the most common symptoms. There are over 300 symptoms of celiac disease! I too did not fit the usual symptom list: I was a tall kid, athletic, and suffered from chronic C since babyhood. They thought it so unlikely that celiac disease was a problem that they never mentioned it or tested for it... Technically, it's unlikely that anyone would have celiac disease as less than 1% of people have it, but someone's gotta get it.  LOL

 

Also, hypothyroidism is common among celiacs and can cause C as well.  You might want to request a TSH test (should be near a 1), free T4 and freeT3 (should be in the upper 50-75% range of the lab's normal reference range, and TPO Ab.

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Immunoglobulin A (IgA) is a control test to make sure you make enough IgA for accurate IgA celiac based testing. About 5% of celiacs are deficient in IgA so thier tests are often false negatives. Your IgA looks just fine so your other tests should not be affected.

 

The gliadin IgA deaminated test is the DGP IgA, which is a newer and good celiac test. Yours is negative so you make not have celiac disease, but that test's sensitivity is only 82-96% which means it will miss 4-18% of all celiacs. See page 12 of this report for my source: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Your tTG IgA is positive. That test is 91-99% specific to celiac disease, which means that 1-9% of positive test results could be caused by something other than celiac disease. Usually when a patient falls into that 1-9% group, their results are a weak positive so there is a slim chance that you don't have celiac disease, but a 91-99% chance that you DO have celiac disease.  False negative tTG IgA tests can be caused by thyroiditis, crohn's, colitis, chronic liver disease, diabetes, or a serious infection. If it's not celiac disease (which it most likely is) then your doctor should be looking into these other causes.

 

It is not unusual for a celiac to have only some positive tests. I would say that at least haf fall into that category. And then there are many who have negative blood tests but a positive biopsy and vice cersa -  we all have celiac disease though.

 

Doctors only look at the most common symptoms. There are over 300 symptoms of celiac disease! I too did not fit the usual symptom list: I was a tall kid, athletic, and suffered from chronic C since babyhood. They thought it so unlikely that celiac disease was a problem that they never mentioned it or tested for it... Technically, it's unlikely that anyone would have celiac disease as less than 1% of people have it, but someone's gotta get it.  LOL

 

Also, hypothyroidism is common among celiacs and can cause C as well.  You might want to request a TSH test (should be near a 1), free T4 and freeT3 (should be in the upper 50-75% range of the lab's normal reference range, and TPO Ab.

 

Thank you Nichole for the blood test lesson, I really appreciate it. You read so many things, you are just not sure.

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Pl. trust ur nurse practitioner more than anyone else.... After all, she is the one who diagnosed u with celiac ... Symptoms + elevated blood test is enough esp if u respond to a gluten free diet...esp since u feel bloating on reintroduction of gluten.

And u are absolutely right, all children before the introduction of baby food should be checked for the celiac gene. It costs just $149...without the gene one can't have Celiac. This will happen in the future , but I don't know how far away...

u need to get tested for all micronutrients and vitamins and bring them to a normal level ... Best wishes....

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not having DQ8 or 2 is NOT an absolute that you can't have/develop celiac disease.

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Thank you Lisa. It's nice to hear someone that went through similar things. Maybe this at least will help me through the next two weeks.
 
I feel the same about Fibromyalgia and testing. In fact, if 1 out of 100 people have Celiacs and it causes so many bad problems and it's curable, why not just test kids when they are born or young automatically? I so feel this with every bit of me but I have to stay a sceptic because I have been wrong before and I don't want to get ahead of myself. When you were really sick, did you have any issues with exercise? That has been one of my biggest issues with all of this. I can't lose weight no matter what Weight Watchers plan I am on, etc... The only way I can even lose a pound is cutting out the carbs, never knowing that had anything to do with gluten). Exercise can also help only a little for me but the minute I exert myself even for 20 minutes of light walking on a tredmill, I feel ill all over with buring eyes and can't function for a week. It's like my whole immunie system is being attacked or something. It's been something so hard to explain to doctors and people, no one understands when you say "I get litterly sick from exercise". I personally love to work out, but at this point it is a love/hate relationship. I want to do what the guy or girl next to me is doing but if I did that, I would be sick for two weeks. Like I have the flu, minus the fever. I know everyone is different but I have been looking for years for someone that has the same reaction to exercise.
 
Also, the "tTG-IgG test", is that different from the "Transglutaminase IGA Autoabe" test in my results?
 
Thanks, Rachel

 

 

Hi Rachel!

 

My biggest complaint to every flipping doctor for over 25 years was that I was heavier than I should be for what I ate and how active I was.  As a child I was always chubby even though I ate fairly well and walked to and from school every day - one mile up an 800' elevation change.  In my teens, like many teen girls I did not eat enough and lived off of diet coke and salad -- not a good idea for anyone, but I was healthier than any other point in my life and was a size 5/6 which felt right for my small bone structure.  In my 20s and 30s I was working full time, was a student at night followed by raising two small children while running my own business...always eating reasonably and exercising (running, biking, walking, hiking, kayaking, skiing) yet continually gaining weight ... 10-20 pounds during my 20s, 20-30 pounds in my 30s and then added another 30 in my early 40s.  Each and every doctor dismissed my complaint with the old "calories in, calories out" statement  :angry:  -- while true for a normal body, this is not true for a body in crisis.  I dropped 40 pounds my first year gluten-free -- eating more than I had at any other time in my life.  I haven't lost anymore and I do need to...but I am at a much healthier weight than the worst time right before diagnosis.

 

I have a long history with exercise allergy/intolerance.  As a child I always turned bright red during any exertion, but felt fine.  In my 20s I lost the ability to run due to joint/ligament issues (these improved gluten-free...on good days I can jog and my knees haven't "popped out" sideways since I was diagnosed...I've even considered not using patella straps for skiing, but am not brave enough yet). 

 

In my late 20s/early 30s I started having issues while exercising in the heat of the day, and started having breathing problems and turning red not only in my face, but my neck, chest and then trunk were turning bright red.  Eventually I developed an abdominal bloat with exercise - which was worse if I eat anything before exercise (this did not go away with the removal of gluten....turns out it was related to my body's inability to regulate histamine (can be a side effect of celiac damage in the small intestine or I might have had a histamine/mast cell issue all along).  The breathing issues have continued if I am in direct sunlight or exercise in weather over 65 and sometimes no matter what precautions I take...so it leaves me walking and riding in the very early morning hours only.  I have to carry an inhaler, benedryl and epi pen at all times.

 

Here is a complete celiac antibody panel:

 

Total Serum IgA

tTG-IgA and tTG-IgG

EMA-IgA

DGP-IgA and DGP-IgG

 

you have had the tests in blue and have not had the tests in red. :)

 

PS...I completely understand the desire to exercise, but it making you sick.  I have a sister that HATES to exercise that wishes she could trade places with me to have a reason to be lazy...while it leaves me sick and tire with HUGE desire to be outdoors and active all day long.  If I could regain my ability to ski all day, I think I would run away from home to be full time Ski Patrol and still may one day!

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Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in? I lasted six days, I felt like I was dying. My eyes were burning and black and red underneath with swelling, I looked like death. My husband is traveling and I couldn't take care of our five year old. Two days ago I needed a break, I went off gluten again. I just couldn't take it anymore. Besides a massive headache when I woke this morning (I get neck headaches due to two slight herniated disks in my neck and slight arthritis), I felt better today with more energy and more clear then I ever had. I ate gluten free all day again today, I never felt so FREE! Tomorrow it all comes to an end, my husband yelled at me and told me I better listen to the doctor and eat my gluten. I have cried so many times today that I have to start ingesting again. Now being off gluten twice in the past few weeks and going back on has convinced me gluten is 100% poisin to me. No matter what my test results may be, there is in no way, shape or form I will ever be ingesting gluten ever again. 6 more days of gluten and then the rest of my life can begin! I live in NY and the thought of a NY bagel used to get me so excited. Today the thought of it makes me ill. That is so crazy because bagels were my favorite foods in the world. So tomorrow, wish me luck, what should I eat? I can't wait till my husbands home so I can roll up in a ball and wait out the rest of my time.

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Oh yeah, I wanted to add, I went to see a Psyotrist the other day for my chronic neck pain, headaches and stiffness who is part of a large neuro surgery group at a prominent hospital here where I live. He said despite my minor two herniations and minor arthritis, he thinks all of my pain or most of it is being caused by malnutrition/vitamin deficiencies. He said he would be shocked if my endoscopy came back negative. I couldn't believe my ears. You know how many years I have gone to this doctor and that doctor for my neck? Crazy!

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Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in? I lasted six days, I felt like I was dying. My eyes were burning and black and red underneath with swelling, I looked like death. My husband is traveling and I couldn't take care of our five year old. Two days ago I needed a break, I went off gluten again. I just couldn't take it anymore. Besides a massive headache when I woke this morning (I get neck headaches due to two slight herniated disks in my neck and slight arthritis), I felt better today with more energy and more clear then I ever had. I ate gluten free all day again today, I never felt so FREE! Tomorrow it all comes to an end, my husband yelled at me and told me I better listen to the doctor and eat my gluten. I have cried so many times today that I have to start ingesting again. Now being off gluten twice in the past few weeks and going back on has convinced me gluten is 100% poisin to me. No matter what my test results may be, there is in no way, shape or form I will ever be ingesting gluten ever again. 6 more days of gluten and then the rest of my life can begin! I live in NY and the thought of a NY bagel used to get me so excited. Today the thought of it makes me ill. That is so crazy because bagels were my favorite foods in the world. So tomorrow, wish me luck, what should I eat? I can't wait till my husbands home so I can roll up in a ball and wait out the rest of my time.

Sorry you are suffering so much. Call your doctor's office this morning and ask to speak to a nurse about what is going on with your symptoms. Your doctor may tell you to stop the challenge. Reactions after stopping gluten even for a short time and then adding it back in can be severe and are an important part of the diagnosis process. Your doctor may even give you a diagnosis based on that reaction and your blood test results.

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I spoke to this new doctor I really like's partner in his office. He was pretty old and old school, I could tell. He was going over my blood work again on the phone with me today and goes, this is very unlikely that you have Celiacs. I said why do you say that. He says, you have no history of chronic diarrhea, just a little bit here and there...LOL. 

 

Yep - this doctor is outside his realm of understanding.  I had no symptoms.  Many Celiacs are asymptomatic.  Others have symptoms but no GI symptoms.  I only requested the blood tests because Celiac runs in my family.  I was "weakly positive" - which to me is like saying you're "weakly pregnant" - my ttg iga was 13 on a scale that considered anything over 11 as positive.  My biopsy showed moderate to severe villi damage.  And the inflammation in my small intestine was visible to the naked eye.

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Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in?

 

Yes.  Once your body gets used to the idea of not having to deal with gluten, it tends to react violently to being assaulted by it again.  As I mentioned above, I had no symptoms when I went gluten free (just 6 months ago).  After being gluten free for about 3 months I accidentally got glutened by a little tiny taste of what I thought was quinoa salad.  Turned out to be tabuli with bulgar wheat in it.  Within a few hours I felt like I had food poisoning.  Cold sweats, shakes, inability to get warm, inability to think.  The worst of it only lasted a couple of days but it took about 5 days to feel relatively normal again and a few weeks to really feel back to being me.

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Thanks for the advice, I will tell my doctor and gastro about this. I actually was diagnosed by my regular doctor already with Celiacs based on all my blood tests and years of symptoms. But for my own piece of mind, I have to have this test. I have a five year old daughter and a mother with similar symptoms. I have been told so many things by so many doctors over the past 20 years that I need something concrete, you know? I know I have this sensitivity, just want to know if it is definitely Celiacs or a sensitivity. I need closure if this is what has been wrong with me all these years. It's hard to explain. I will just suffer, just glad there is somewhere I can talk about this, my family is sick and tire of hearing about it I'm sure! It's only 5 more days.

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Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in? I lasted six days, I felt like I was dying. My eyes were burning and black and red underneath with swelling, I looked like death. My husband is traveling and I couldn't take care of our five year old. Two days ago I needed a break, I went off gluten again. I just couldn't take it anymore. Besides a massive headache when I woke this morning (I get neck headaches due to two slight herniated disks in my neck and slight arthritis), I felt better today with more energy and more clear then I ever had. I ate gluten free all day again today, I never felt so FREE! Tomorrow it all comes to an end, my husband yelled at me and told me I better listen to the doctor and eat my gluten. I have cried so many times today that I have to start ingesting again. Now being off gluten twice in the past few weeks and going back on has convinced me gluten is 100% poisin to me. No matter what my test results may be, there is in no way, shape or form I will ever be ingesting gluten ever again. 6 more days of gluten and then the rest of my life can begin! I live in NY and the thought of a NY bagel used to get me so excited. Today the thought of it makes me ill. That is so crazy because bagels were my favorite foods in the world. So tomorrow, wish me luck, what should I eat? I can't wait till my husbands home so I can roll up in a ball and wait out the rest of my time.

 

Good Morning Rachel!

 

I'm not surprised at the strong reaction you've had.  My first week gluten-free there was still a small part of me that was doubtful that we had finally found what the cause of a lifetime of symptoms was...well the very first time I ate at a restaurant after diagnosis...I had my very first glutening...there is a particular type of brain fog that I get about 45 minutes after glutening....and that was after ordering a gluten-free pizza...that experience removed the tiny bit of doubt I had remaining and the next day I received my biopsy results...total villious atrophy in all samples.

 

I agree with Ravenwood...call your doctor today...they may recommend you stop the challenge.  If they do not....wait until evening to eat just one half of that bagel...save the other half for tomorrow night...then pick up a donut or a slice over the next few days...but there is no need to eat more than one slice of bread's worth of gluten over the next five days.  AND...you don't need any gluten the day of your endoscopy...so that date will be your official first day gluten-free :)

 

Crazy what a difference a week can make...huh?

 

Oh....I think I told you but just in case...ask for written copies of both procedural and pathology report and have hubs or whomever is there with you ask the doctor what he saw....often the description right after the procedure is easier to understand and can provide more detail than the procedural report.

 

Hang in there  :wub:

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Thank you Lisa, will do. Our stories sound so similar. Were you diagnosed with Fibromylagia after your Celiac confirmation?

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I think I will pick one little piece of my favorite food for each day. If I am going down, it's going to taste good!!! 

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Thank you Lisa, will do. Our stories sound so similar. Were you diagnosed with Fibromylagia after your Celiac confirmation?

 

Yes...I had all the symptoms of "Fibromyalgia" for about 20 years that got progressively worse and would come and go -- "flares" were common and became more frequent with higher levels of pain.  When I removed gluten, my digestive symptoms improved a great deal during the first weeks/months, but my fibro symptoms remained -- whether they were worse or simply that they were more pronounced because other parts of me were feeling good for the first time in my life I'll never know.  Was finally diagnosed about seven months after Celiac diagnosis -- trialed meds and as usual for me the medication side effects made it impossible for me to take them and were not improving my fibro symptoms anyway.

 

While we may have similar stories -- I am hopeful that you will improve quickly -- even the fibromyalgia symptoms!  None of us are exactly the same although many of us that went undiagnosed for long periods do take longer to heal.

 

The best advice I can offer is when you remove gluten -- eat primarily whole foods, avoiding processed items for the first weeks/months gluten-free -- even items labeled gluten-free can be tough on our damaged systems -- eat processed items as treats if you are really missing something -- just limit them to treats rather than staples.

 

If your taking orders...I'll have one half of an everything bagel ;) 

 

Oh...not sure I mentioned...sometimes the last days of challenge are made a bit easier if you consume the gluten item at the end of the day so the symptoms are slightly contained to sleeping hours.  Doesn't always work, but has for some.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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