Jump to content
  • Sign Up
0
spirit_walk

Just Got Back From The Mayo Clinic In Minnesota - Is This Familiar To Anyone Else?

Rate this topic

Recommended Posts

Hello,

 

I finally made the trip I've been looking forward to for quite some time. I'd been to 7 different doctors, and none could tell me what is wrong with me or what is causing my symptoms. I thought the Mayo Clinic might finally provide the answer, but once again, no answers.

 

A brief history:

 

Two years ago, I ate whatever I wanted (very poor diet consisting of fast food, sodas, and a lot of sugar) and never experience an allergy to anything. I had a hemorrhoid issue that was causing stress to life, but that was my only real health issue. In March of 2012, I had a banding procedure to remove internal hemorrhoids, and suddenly my health changed. Within a week, my hands began to hurt to the point that washing dishes, turning a door knob, or picking up my 18 month old daughter was almost unbearable. I initially thought I had RA, but after seeing four rheumatologists (including one at Mayo), I'm pretty much convinced I don't have RA or Lupus. The hand pain eventually migrated to my wrists, knees, hips, and finally jaw. Over time, I began getting popping in my wrists and shoulders. I know have considerable popping in those two areas as well as my jaw. In September of 2012, I saw a nutritionist who did IGG/IGE bloodwork for food sensitivities. She told me I was intolerant to 30 foods tested: Egg, carrot, coffee, lemon, green peas, rye, tuna, yeast, asparagus, cashew, crab, lobster, peanuts, safflower, walnut, yogurt, barley, cauliflower, gluten, malt, black pepper, sesame, watermelon, cantaloupe, cheese, grape, milk (cows), pineapple, tomato, wheat.

 

Because I was willing to do anything to feel better, I tried to cut out all foods on the list. I noticed that the change in diet began to make the joint pain better (although it didn't go away). However, this diet has caused me to go from 156 pounds to about 130, give or take a few pounds depending on the day. My metabolism is just too high to maintain weight with this diet. From March of 2012 to February 2013, I went from my GP an orthopedic surgeon, to a nerve specialist, to 3 different rheumatologists. I also saw an allergist who told me I didn't have food allergies. After the third rheumatologist told me to come back and see him when I was in more pain, I gave up and started planning to make the trip to Rochester for the Mayo Clinic. I've never had any SWELLING in my joints even on my worst days, but they do get warm.

 

So here I am today. I've had numerous blood tests done and just finished a battery of them at the Mayo Clinic. I also had a joint scan done and urine/stool tests. I've previously had a bone scan as well. All results are normal. I've spent thousands on tests, MRI's, X-Rays, bone scans, joint scans, and consultations only to be told I'm a healthy person according to all the doctors. I was also told at Mayo that the IGG/IGE tests done by the nutritionist were a scam and I need to go back to eating more foods. He told me there was no such thing as "leaky gut," that it was a hoax.

 

The problem is that food is tied to the joint pain and the POPPING! If I eat things high in sugar or off my list, my joint pain gets worse almost immediately. I can tell a difference in the popping within 10 minutes of swallowing some foods.

 

I'm now having stomach/gut pain (started about 2 months ago). It comes and goes, and the real problems are the joint pain and the popping. I can't go 10 minutes without my shoulders popping, and it's frightening. My wrists begin to feel tight like they're going to lock up, and then they pop when I move them.

 

While I'm not certain I'm intolerant to the 30 foods listed, I am certain that I am to ones I've tried. And food is tied directly to my joint pain and popping.

 

I am having my first colonoscopy and endoscopy done this week (mainly to rule out anything crazy like a tumor or something). I haven't eaten gluten for 9 months though, so they won't be able to do a biopsy for Celiac. Mayo did a gene test for Celiac and I do not carry the genes, but they told me that doesn't completely rule it out (confused).

 

Has anyone had popping in their joints or joint pain without real stomach issues? Even if I don't have Celiac's disease, I know I've become intolerant to many of these foods. I've never had any bleeding even with the hemorrhoid issues.

 

I'm very frustrated. I feel like I'm on an island with no help in sight. But, I'm still looking for answers. I thought maybe someone on this board could provide some insight or clues to my issues.

 

 

Share this post


Link to post
Share on other sites

Between the Bridges in Mankato has been helping me.  I think the doc there had practiced at the Mayo clinic, but has moved on.  I have heard of someone else who went to the Mayo clinic and they were really helpful.  I hope you will get the help you need wherever it is.

 

D

Share this post


Link to post
Share on other sites

Between the Bridges in Mankato has been helping me.  I think the doc there had practiced at the Mayo clinic, but has moved on.  I have heard of someone else who went to the Mayo clinic and they were really helpful.  I hope you will get the help you need wherever it is.

 

D

 

 

Yeah, I guess I should add that I'm back home in Texas now. Couldn't afford to stay at Mayo for weeks, so I'm back home and going to get the endoscopy and colonoscopy here in Austin. It also might help to add that I am a 39 year-old male. I didn't mention that in the original post.

Share this post


Link to post
Share on other sites

My goodness!! It'd the Mayo Clinic!! You'd think they'd of done more to help you find out what id wrong with you!! I don't have any of your symptoms but I feel for you!! I do also hope you find out what is causing all your pain! 

Share this post


Link to post
Share on other sites

I too have had a lot of joint pain without swelling. I also suspected lupus although they rheumy I saw in the spring says my problems are still celiac related. The problem with fatigue and arthralgias are that they are common to many health issues (as you know). I also have thyroiditis and that could also be at the root of the fatigue and/or pain.

celiac disease or non-celiac gluten sensitivity (NCGS) can cause pain and fatigue....do you know what celiac tests the clinic ran? If you were gluten-free, that will affect the results though. Is it possible for you to eat gluten before your endoscopy, or to push it back another week? Often just two weeks of gluten is enough for accurate biopsies.

Good luck.

Share this post


Link to post
Share on other sites

nvs,

 

It's too late for me to cancel my appointment (scheduled for Monday morning). I'm not sure what the genetic test was called. It was a blood test. It's labeled Gluten Sensitivity AG, then says "permissive genes absent. Celiac Disease extremely unlikely." 

 

Another page reads, "Celiac gene pairs present  --- No (method: Low to Medium or High Resolution Molecular Testing)

 

 

Are you sure that the genetic tests can be false negatives if I haven't been eating gluten?

 

Also, what are your thoughts on the gastroenterologist saying that leaky gut is a hoax and that the IGG/IGE tests are inconclusive?

Share this post


Link to post
Share on other sites

I don't know a lot about genetic testing. I believe most celiacs have the gene pairs but not all do. They are just the gene pair that is most common. I know I have seen at least one board member that has celiac even though they know they do not have the usual genes for it.  It does mean that you are less likely to have celiac disease though.

 

Going gluten-free does not affect genetic tests but it does affect celiac tests. For some people who have gone gluten-free, the blood tests go to the normal range within weeks. For others, it can take years to go down like my own tests; after one year gluten-free, one test is normal and the other is still slightly elevated but I think I am taking longer than normal to get back to normal.  If a celiac is totally gluten-free, eventually their blood tests will be normal - it will look the same as someone who does not have celiac.

 

If you have been gluten-free for 9 months, there is a good chance that any celiac testing done on you (possibly the Gluten Sensitivity AG test they ran) would be negative. There is also a strong possibility that any intestinal villi damage that was done by your reaction to gluten would have healed after 9 months gluten-free, so you endoscopic biopsy may end up negative.

 

The Gluten sensitivity AG test is probably the anti-gliadin antibody test (could be IgA or IgG based). This is an older test that detects a sensitivity to gliadin. A positive test is thought to indicate gluten sensitivity in celiacs or in NCGS. The remaining celiac panel is the tissue transglutiminase, endomysial antibodies, and deaminated gliadin peptides; these test for intestinal villi damage and are not present in those with NCGS. They are written as:

  • tTG IgA and tTG IgG
  • EMA IgA
  • DGP IgA and DGP IgG

IgA is Immunoglobulin A and is a part of the immune system based in the mucosal linings of the body (like the small intestine which is why they use tests based in IgA). About 5% of celiacs are deficient in Iga so any tests they have that are Iga based will yield a (false) negative result. I'm guessing (and this is just a guess) that they ran the total serum IgA test on you and it fell in normal range, which they would call inconclusive.

 

This report has lots of info on celiac disease. Pages 11-12 deal with testing and how sensistive the tests are (how good they are at detecting celiac disease). http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

The IgE is the part part of your immune system that deals with allergies. A high level shows allergies whereas a normal or low level means you have no "true" allergies. I'm guessing that inconclusive means you have no true allergies.

 

I don't think they did much celiac testing on you, possibly because of your negative gene test which makes it unlikely that you have celiac disease, but still possible. If you want celiac testing done, you will need to do a gluten challenge; you'll need to eat the equivalent of about 2 slices of bread a day for 2-3 months. Some people do just 4 weeks but it's harder to be certain you are getting accurate results with shorter times.  Endoscopies only require a minimum two week gluten challenge to be considered accurate, which is why I asked if you could push your test back a bit.

 

If Mayo doesn't give you answers, you could continue gluten-free and dairy free (those often go together) and continue figuring out your food sensitivities.  Thyroiditis can cause constipation and hemorrhoids, as well as pain too.

 

I don't get much popping like you described except in my groin/hip area when my leg will lock, and then pop out rather painfully. My shoulder will pop too, but it's not painful nor frequent.

 

I hope you get more answers.  Good luck with your procedure on Monday!

Share this post


Link to post
Share on other sites

Thanks for all the advice and information nvsmom. I've had my thyroid and hormones checked, but I still wonder about my thyroid. My hands get very cold when they aren't feeling feverish and hurting. I'll ask my gastro doctor about my genetic testing for Celiac.

 

Do you have any thoughts on "leaky gut?" I've read about it on the web and was told I likely had this from the nutritionist last year. But, the medical doctors I've seen don't seem to agree.

 

I've followed Jennifer Esposito and her journey with Celiac's disease. I feel like my problems mirror hers except instead of stomach issues, I have joint pain. Something has created all these food intolerances even if I'm not a true Celiac.

Share this post


Link to post
Share on other sites

I don't know a lot about leaky gut. The theory behind it makes sense to me - I would guess it will be more medically accepted in a few more years. I don't see how trying to heal a leaky gut could hurt you so you might as well do what you can for yourself.

Share this post


Link to post
Share on other sites

I just read something about leaky gut yesterday let me get that and post it for you!! Seems some Drs. think it is nothing.... 1st sentence 

 

http://www.drweil.com/drw/u/QAA361058/what-is-leaky-gut.html

 

http://www.webmd.com/digestive-disorders/features/leaky-gut-syndrome

Here is part of what the last one says : 

 

"Leaky gut syndrome" isn't a diagnosis taught in medical school. Instead, "leaky gut really means you’ve got a diagnosis that still needs to be made,” Kirby says. “You hope that your doctor is a good-enough Sherlock Holmes, but sometimes it is very hard to make a diagnosis.”

Share this post


Link to post
Share on other sites

I just read something about leaky gut yesterday let me get that and post it for you!! Seems some Drs. think it is nothing.... 1st sentence 

 

http://www.drweil.com/drw/u/QAA361058/what-is-leaky-gut.html

 

http://www.webmd.com/digestive-disorders/features/leaky-gut-syndrome

Here is part of what the last one says : 

 

"Leaky gut syndrome" isn't a diagnosis taught in medical school. Instead, "leaky gut really means you’ve got a diagnosis that still needs to be made,” Kirby says. “You hope that your doctor is a good-enough Sherlock Holmes, but sometimes it is very hard to make a diagnosis.”

 

Thanks. I think I actually looked that site up and read it a couple of weeks ago. Dr. Alessio Fasano, one of the leading Celiac Doctor's speaks about Leaky Gut here:

 

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/gluten-free-society-blog/dr-fasano-on-leaky-gut-syndrome-and-gluten-sensitivity/

 

This is part of the frustration for me. Mayo said there's no such thing. Yet there are other doctor's who say it's a gray area or that it is a real phenomenon. 

Share this post


Link to post
Share on other sites

Absolutely!! It is such a thing!! I believe anyway, altho I don't know what exactly it is. But I believe it is something people have and they just don't want to admit it!!! 

Share this post


Link to post
Share on other sites

Welcome!

 

Just saw your thread...and am too tired to post adequately....for now know...you. are. not. alone...I'll post more tomorrow or one of these nice folks will remind me ;)

 

Hang in there! 

Share this post


Link to post
Share on other sites

Welcome!

 

Just saw your thread...and am too tired to post adequately....for now know...you. are. not. alone...I'll post more tomorrow or one of these nice folks will remind me ;)

 

Hang in there! 

 

I look forward to your post and any others who could shed some light. I am highly concerned about the persistent popping in the shoulders and wrists. Also if anyone has any ideas on how to add calories for someone who can't have gluten, dairy or eggs, that would be helpful.

 

Had an upper endoscopy and colonoscopy today. I'll get results within the next week, but it was an easy procedure. No soreness! Was up the entire night with the prep, and I'm happy to have it behind me.

Share this post


Link to post
Share on other sites

I look forward to your post and any others who could shed some light. I am highly concerned about the persistent popping in the shoulders and wrists. Also if anyone has any ideas on how to add calories for someone who can't have gluten, dairy or eggs, that would be helpful.

 

Had an upper endoscopy and colonoscopy today. I'll get results within the next week, but it was an easy procedure. No soreness! Was up the entire night with the prep, and I'm happy to have it behind me.

We like to blame everything on gluten, but maybe some of your issues have nothing to do with gluten? Something we all need to remember.

Ways to add calories - oil. If you eat a hamburger - get the full fat versions. Add a little olive oil to a cooked veg or chicken. Eat high Calories foods like avocado and coconut. Bacon? I know its not heart healthy, but in the short term, its OK. Potatoes in various styles. A favorite at our house is the red skin ones, don't peel, cut I to 1/4 inch cubes toss with olive oil, wrap up on foil and grill or bake at about 400F for 20 minutes. Check the time as the size matters. :)

Share this post


Link to post
Share on other sites

My wife said the doctor told her my stomach was more red that usual and said it could be gastritis. Also said I had a polyp in my esophagus that he removed. He took biopsies of the polyp and stomach and I believe they are testing for celiac and not sure what else.

 

My symptoms are just like what I would read for celiac, except instead of major stomach pain, the food I eat causes almost immediate joint pain in hands, wrists, hips, and jaw. I've been told by 4 rheumatologists that I don't have RA, Lupus or other rheumatic conditions, so I think all this stems from my gut.

 

With a very poor diet including a lot of sugar, sodas, and fast food, could it do enough damage to the lining of the stomach to cause these kind of symptoms? The doc said I may not be celiac and may just have a gluten intolerance. Could that cause this many issues? I've had ulcers in my mouth my entire life, and I've always had difficulty gaining weight. As a child, I had diarrhea a lot, but it stopped when I went off to college at around 17 or 18.

 

With so many tests coming back normal in the past (with bloodworm, joint/bone scans, x-rays, etc), I feel like I might finally be onto something with the stomach. I waited a long time to have the endoscopy done b/c I went so long without any stomach pain.

Share this post


Link to post
Share on other sites

My wife said the doctor told her my stomach was more red that usual and said it could be gastritis. Also said I had a polyp in my esophagus that he removed. He took biopsies of the polyp and stomach and I believe they are testing for celiac and not sure what else.

 

My symptoms are just like what I would read for celiac, except instead of major stomach pain, the food I eat causes almost immediate joint pain in hands, wrists, hips, and jaw. I've been told by 4 rheumatologists that I don't have RA, Lupus or other rheumatic conditions, so I think all this stems from my gut.

 

With a very poor diet including a lot of sugar, sodas, and fast food, could it do enough damage to the lining of the stomach to cause these kind of symptoms? The doc said I may not be celiac and may just have a gluten intolerance. Could that cause this many issues? I've had ulcers in my mouth my entire life, and I've always had difficulty gaining weight. As a child, I had diarrhea a lot, but it stopped when I went off to college at around 17 or 18.

 

With so many tests coming back normal in the past (with bloodworm, joint/bone scans, x-rays, etc), I feel like I might finally be onto something with the stomach. I waited a long time to have the endoscopy done b/c I went so long without any stomach pain.

 

Many of the symptoms you are talking of can be related to Celiac Disease.  That you have inflammation in the digestive system certainly adds to the possibility.  If your doctor has run all necessary blood tests -- it is time to remove all sources of gluten for at least three months -- six is better to monitor symptoms as there is no test for Non Celiac Gluten Sensitivity NCGS, which can present with many of the same symptoms as Celiac Disease - including the autoimmune type symptoms.

 

Here is a list to double check:

 

Total Serum IgA

tTG - both IgA and IgG

EMA - IgA

DGP - both IgA and IgG

 

Nutrients should be checked as well as malabsorption of nutrients can cause/contribute to many of the symptoms you mention:

 

CBC - Complete Blood Count

CMP - Complete Metabolic Panel

 B1, B2, B6, B12, D, K

Iron, Ferritin, Copper and Zinc

 

Hang in there and if you are done with testing -- do try to remove ALL gluten as it is the only test for NCGS :)

Share this post


Link to post
Share on other sites

Many of the symptoms you are talking of can be related to Celiac Disease.  That you have inflammation in the digestive system certainly adds to the possibility.  If your doctor has run all necessary blood tests -- it is time to remove all sources of gluten for at least three months -- six is better to monitor symptoms as there is no test for Non Celiac Gluten Sensitivity NCGS, which can present with many of the same symptoms as Celiac Disease - including the autoimmune type symptoms.

 

Here is a list to double check:

 

Total Serum IgA

tTG - both IgA and IgG

EMA - IgA

DGP - both IgA and IgG

 

Nutrients should be checked as well as malabsorption of nutrients can cause/contribute to many of the symptoms you mention:

 

CBC - Complete Blood Count

CMP - Complete Metabolic Panel

 B1, B2, B6, B12, D, K

Iron, Ferritin, Copper and Zinc

 

Hang in there and if you are done with testing -- do try to remove ALL gluten as it is the only test for NCGS :)

 

Thanks Lisa,

 

I have been gluten free for the last 9 months. There may have been a handful of times that I accidentally ate something with gluten in it, and I have eaten stuff like Nut-Thins that say they are wheat and gluten free but have a disclaimer (produced in a facility that also makes products containing wheat). I've had many blood tests done including CBC, but I'm not sure about full gluten panels. The doctors have told me that my vitamin and mineral levels are in good shape. My wife and daughter also eat gluten, and I share the same kitchen (obviously). I never imagined that I could be hyper-sensitive to gluten if I've been eating it for my entire life. Maybe that is a possibility.

 

Anyway, I don't think I could go on a gluten diet for several weeks, b/c eating it will drive the joint pain up. But even after 9 months, I still have considerable pain and discomfort in the joints along with the popping.

Share this post


Link to post
Share on other sites

Thanks Lisa,

 

I have been gluten free for the last 9 months. There may have been a handful of times that I accidentally ate something with gluten in it, and I have eaten stuff like Nut-Thins that say they are wheat and gluten free but have a disclaimer (produced in a facility that also makes products containing wheat). I've had many blood tests done including CBC, but I'm not sure about full gluten panels. The doctors have told me that my vitamin and mineral levels are in good shape. My wife and daughter also eat gluten, and I share the same kitchen (obviously). I never imagined that I could be hyper-sensitive to gluten if I've been eating it for my entire life. Maybe that is a possibility.

 

Anyway, I don't think I could go on a gluten diet for several weeks, b/c eating it will drive the joint pain up. But even after 9 months, I still have considerable pain and discomfort in the joints along with the popping.

 

Ahhh,,my apologies...didn't realize you were gluten-free for nine months....the celiac antibody blood tests are of no use other than follow up at this point.

 

Have you tried keeping a food/symptom log?  Some of us that went undx'd for a long while have to remove some other foods to help the gut heal.  Nightshades -- Potato, Tomato, All Peppers and Eggplant is a common one for folks with arthritis type issues.  Did you say you tested negative for inflammation?  This does not rule out inflammation in the body caused by food -- well at least this is my experience.  Now that I have eliminated everything that was causing me to flare - I no longer have muscle and joint pain all day long -- only when I eat something that is not on my safe list. 

Share this post


Link to post
Share on other sites

Did you say you tested negative for inflammation?  This does not rule out inflammation in the body caused by food -- well at least this is my experience.  Now that I have eliminated everything that was causing me to flare - I no longer have muscle and joint pain all day long -- only when I eat something that is not on my safe list. 

 

Yes, I have had many inflammation blood tests done through rheumatologists. All have come back negative. Couldn't understand how it never showed up in my blood when I was feeling it all the time. So, if you're correct about it not ruling out inflammation caused by food, that would make a lot of sense for me. I saw a nutritionist that did a food sensitivities test on me (IGG & IGE). Results were that I was intolerant to over 30 foods. I've tried to cut most all of them out, but I still eat Udi Bread which has egg. I do notice more pain when I try those foods. My problem with the diet is that I keep losing weight due to lack of calories. I used to eat fast food, chocolate, sodas, etc all day and weighed about 155. Now I'm down to 130 eating 3 full meals a day with snacks in between. I just can't get enough calories with no gluten, dairy, egg, or red meats. It's a catch 22 for me, and all the doctors I've seen keep telling me to add those foods back in to gain some weight back. The traditional doctors I've seen don't put much stock in the food sensitivities blood test, but I KNOW those foods are causing the pain. :(

Share this post


Link to post
Share on other sites

I'll also add that these food sensitivities came on rapidly. One day I was eating any and everything in front of me. Within a few weeks the joint pain started and became almost unbearable. I saw the nutritionists about 3-4 months later and she did the bloodwork. Whatever happened in the gut, it came on like wildfire and I suddenly couldn't eat so many foods that I'd eaten on a regular basis. I don't know if this might have been a gluten intolerance that slowly manifested into those symptoms (I was having sensation in my hands on and off for about 3 years prior). When I say sensations, I mean numbness and mild pain in the hands. I had a banding procedure done to remove internal hemorrhoids and within the next two weeks the joint pain started getting really bad. Maybe that was the trauma that broke this wide open.

Share this post


Link to post
Share on other sites

We like to blame everything on gluten, but maybe some of your issues have nothing to do with gluten? Something we all need to remember.

Ways to add calories - oil. If you eat a hamburger - get the full fat versions. Add a little olive oil to a cooked veg or chicken. Eat high Calories foods like avocado and coconut. Bacon? I know its not heart healthy, but in the short term, its OK. Potatoes in various styles. A favorite at our house is the red skin ones, don't peel, cut I to 1/4 inch cubes toss with olive oil, wrap up on foil and grill or bake at about 400F for 20 minutes. Check the time as the size matters. :)

 

 

We like to blame everything on gluten, but maybe some of your issues have nothing to do with gluten? Something we all need to remember.

Ways to add calories - oil. If you eat a hamburger - get the full fat versions. Add a little olive oil to a cooked veg or chicken. Eat high Calories foods like avocado and coconut. Bacon? I know its not heart healthy, but in the short term, its OK. Potatoes in various styles. A favorite at our house is the red skin ones, don't peel, cut I to 1/4 inch cubes toss with olive oil, wrap up on foil and grill or bake at about 400F for 20 minutes. Check the time as the size matters. :)

 

Thanks for the advice Karen. I haven't had a burger in almost a year, b/c I tried to cut out red meat. Same with white potatoes (nightshades). I have done sweet potatoes and chicken breasts in the oven with olive oil though. I love avocado. Haven't had bacon in quite a while either, but I miss it. I just bought my wife and I New York Strips. We'll see how my stomach handles it. It will be the first red meat I've eaten in a long time.

Share this post


Link to post
Share on other sites

For me....I have had many improved periods as I removed certain foods post celiac diagnosis. 

 

What it boils down to --- for me --- is my system was treating many foods as an invader.  I'd remove or replace foods and then those new foods I was using became problems -- whether it was that I was eating more of them or just recognizing they were a problem because of the symptom log -- i'll never know -- great example -- at about 18 months gluten-free I was having yet another autoimmune flare from hell -- which led to my complete lectin elimination diet -- turns out I was intolerant of nearly high lectin food -- my go to lunch at the time was Quinoa with Red Bell Pepper and Tiny Peas for color -- along with a couple handfuls of peanuts to munch on at my desk -- I can't eat any of those items -- still haven't gotten them back nearly two years later -- I do remain hopeful that I will, but have learned to eat many yummy things without them.

 

I think you are on the right track.  With all that you have removed -- just add good fat where ever possible.  Foods high in histamine or that induce histamine have made the last best improvement to my health....I've been healthier with less pain (relative) since removing them last November -- not suggesting that you need to remove histamines per se....just wanted to preface what I am about to say. Add as much good fat as you can....coconut oil, nuts, avocado (if you tolerate).

 

Did you say you don't eat red meat -- or all meat?  getting enough fat and protein is tough on a limited diet.  If you eat poultry...don't worry about only eating the lean breast meat...eat the legs, thighs and skin too!  Fish?  Salmon in particular has fat and if you aren't gaining or at least maintaining weight - eat larger portions? 

 

I make a "chocolate mousse" in the blender with almonds, cocoa, coconut oil, vanilla and agave -- pretty darn tasty and definitely not low calorie!

 

Hope this helps...and isn't too confused...will try to check back in when I get home.

 

-Lisa

  • Upvote 1

Share this post


Link to post
Share on other sites

For me....I have had many improved periods as I removed certain foods post celiac diagnosis. 

 

What it boils down to --- for me --- is my system was treating many foods as an invader.  I'd remove or replace foods and then those new foods I was using became problems -- whether it was that I was eating more of them or just recognizing they were a problem because of the symptom log -- i'll never know -- great example -- at about 18 months gluten-free I was having yet another autoimmune flare from hell -- which led to my complete lectin elimination diet -- turns out I was intolerant of nearly high lectin food -- my go to lunch at the time was Quinoa with Red Bell Pepper and Tiny Peas for color -- along with a couple handfuls of peanuts to munch on at my desk -- I can't eat any of those items -- still haven't gotten them back nearly two years later -- I do remain hopeful that I will, but have learned to eat many yummy things without them.

 

I think you are on the right track.  With all that you have removed -- just add good fat where ever possible.  Foods high in histamine or that induce histamine have made the last best improvement to my health....I've been healthier with less pain (relative) since removing them last November -- not suggesting that you need to remove histamines per se....just wanted to preface what I am about to say. Add as much good fat as you can....coconut oil, nuts, avocado (if you tolerate).

 

Did you say you don't eat red meat -- or all meat?  getting enough fat and protein is tough on a limited diet.  If you eat poultry...don't worry about only eating the lean breast meat...eat the legs, thighs and skin too!  Fish?  Salmon in particular has fat and if you aren't gaining or at least maintaining weight - eat larger portions? 

 

I make a "chocolate mousse" in the blender with almonds, cocoa, coconut oil, vanilla and agave -- pretty darn tasty and definitely not low calorie!

 

Hope this helps...and isn't too confused...will try to check back in when I get home.

 

-Lisa

Yes, big help Lisa! One of my fears is that I'm going to become intolerant to the little foods I have left. I'm already so restricted that it's difficult to eat a healthy amount. I was told to do the rotation diet and not eat foods more than once over a four day period. That's impossible for me. I try to eat them once or twice and then not eat them again for the next 2-3 days. But, even that is difficult. I'm already wondering if I've lost some of the foods that were originally safe after the first blood test. But, if you are right (and I tend to believe you are b/c I am experiencing similar issues), then my stomach isn't going to heal by removing the gluten if I'm still eating some of the foods that I've tested positive for.

Share this post


Link to post
Share on other sites

Yes, big help Lisa! One of my fears is that I'm going to become intolerant to the little foods I have left. I'm already so restricted that it's difficult to eat a healthy amount. I was told to do the rotation diet and not eat foods more than once over a four day period. That's impossible for me. I try to eat them once or twice and then not eat them again for the next 2-3 days. But, even that is difficult. I'm already wondering if I've lost some of the foods that were originally safe after the first blood test. But, if you are right (and I tend to believe you are b/c I am experiencing similar issues), then my stomach isn't going to heal by removing the gluten if I'm still eating some of the foods that I've tested positive for.

 

Again -- for me -- I don't worry about the rotation thing -- now that I am down to meat, fish, selected vegies and fruits -- oh I did get almond back -- but my total safe food list is very short and I eat as much of those safe foods as i want....I am not dropping weight but I look much lighter -- again that pesky inflammation deal.

 

I should say that many folks have found they need to rotate their foods -- but it simply was not possible when I was at most limited diet so I did not and haven't needed to thus far.

  • Upvote 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   7 Members, 2 Anonymous, 220 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    No Gluten-Free Diet for Tennis Champion Roger Federer
    Celiac.com 09/18/2018 - With a number of major tennis stars singing the praises of a gluten-free diet, including top players like Novak Djokovic, Swiss great Roger Federer weighed in on the topic.
    The 20-time Grand Slam winner says that he’s never tried the gluten-free diet, and that he doesn’t not “even know what that all means…I eat healthy, and I think that's what people should do, too, if they have the options. It's sure important the right diet for an athlete.”
    Djokovic, the 2018 US Open winner has been gluten-free since 2011, and calls the diet his biggest key to his success.
    For Federer, diet is helpful, but not the whole story. “[Diet] can help you, you know. I mean, I think every athlete should be in good shape. I don't think we should have any fat athletes, to be honest. We do too much sports and we should be too professional to let that happen to ourselves.
    If it happens, well, we should wake up. You don't have the right entourage. They're not telling you that you're a bit fat. Players try different things, and whatever works for them. I do my thing. It's been very easy and natural and healthy, and it's worked.”
    So, while Novak Djokovic, and a number of other athletes, have gone gluten-free and continue to tout the benefits, look for Federer to remain faithful to his generally nutritious non-gluten-free diet.
    Read more at: TennisWorldUSA.org

    Connie Sarros
    All About Eggplant
    Celiac.com 09/15/2018 - People have a love/hate relationship with the purple fruit called ‘eggplant’. Eggplants, first cultivated in southern India and Sri Lanka, are also known as aubergine, Guinea squash, melazana, and ‘poor-man’s caviar’. Like potatoes they are members of the nightshade family, and despite the fact that we all consider eggplant to be a vegetable, biologically it is defined as a berry, and therefore it is a fruit.
    When selecting the fruit, select ones that are firm to the touch, have a smooth and shiny skin and are heavy. Avoid those with brown or soft spots and have a dull color. Gently push with your thumb or forefinger. If the flesh gives slightly but then bounces back, it is ripe. If the indentation remains, it is overripe and the insides will be mushy. If there is no give at all, the eggplant was picked too early. Once you bring it home, avoid placing it near tomatoes and apples, as they give off a gas that quickens the ripening process. Try to use the eggplant within two days of purchase.
    There are several cooking hints that will make your ‘eggplant experience’ more tasteful. Do not cook this fruit in an aluminum pan as it may cause discoloration (both of the pan and the fruit!). The skin is edible on small, younger plants, but should be removed on coarser, older ones. Once you cut the eggplant and cook it right away because the flesh will brown (similar to cut bananas). This fruit absorbs oil very easily, so it is recommended that you coat the slices with cornmeal before frying or baking. To help reduce the bitter flavor in older plants, ‘de-gorge’ the eggplant—Slice the eggplant into ½-inch pieces, salt well, then weigh down each slice in a colander to allow the liquid to drain out of the eggplant for 30 minutes—then rinse with cold water and pat dry.
    Equivalents and Nutritional Value—one pound of eggplant equals 3½ cups of diced eggplant and 1¾ cups cooked eggplant. One medium eggplant weights about 1 pound. It contains vitamin C and potassium, has anti-bacterial and diuretic effects, as well as flavanoids (cancer fighting antioxidants). One cup cooked eggplant contains 25 calories.
    The different ways to prepare eggplant are limited only by your imagination. Cut it into matchsticks to add to a stir-fry. Cube it for vegetable stews (Ratatouille). Shred it to make fritters, or puree it for a hummus-style dip. You can also slice it lengthwise and grill it.
    This fruit is probably most famous for the Italian rendition of Eggplant Parmigiana. But the Greeks have taken this dish one step further, ‘Moussaka’. If you have never eaten this, it is a delight to savor. Lean ground beef may be substituted for the ground lamb. Three zucchini may be used in place of the eggplant (if you prefer). Even if you hate eggplant, you will love Moussaka.
    The beauty of Moussaka is that this casserole may be made in advance, then covered and refrigerated overnight, or covered with foil and frozen—before you bake it (thaw in the refrigerator completely before baking). Time is precious for us all, and this concoction does take some time to assemble, but every moment is worth it. This makes an impressive side dish for company, it is perfect for a buffet table, or it can be used as a main dish for a family dinner.
    The following recipe is from my “Wheat-free Gluten-free Reduced Calorie Cookbook”. Traditional Moussaka is ‘loaded’ with calories and fat and cholesterol. This version is lower in calories and fat without sacrificing any of the delicious taste.
    Moussaka (Greek Casserole Dinner)
    Ingredients:
    1 large eggplant, peeled 2 teaspoons olive oil 1 large onion, chopped ½ pound lean ground lamb 5 teaspoons tomato paste ¼ cup white wine ¼ cup chopped fresh parsley 1/8 teaspoon cinnamon 18 teaspoon salt 1/8 teaspoon pepper 1 tablespoon margarine 1 ½ tablespoon cornstarch 1 cup scalded 1% milk 1 egg beaten until frothy 1/8 teaspoon nutmeg ½ cup gluten-free lowfat cottage cheese 1/3 cup gluten-free corn muffin crumbs, dried 1/3 cup Parmesan cheese, shredded Directions:
    Preheat broiler. Cut the peeled eggplant lengthwise into ½-inch thick slices. Spray both sides of the slices with gluten-free nonstick spray; set on a broiler pan and broil until browned, turning once. Preheat oven to 350F. Heat olive oil in a skillet; add onion and sauté until lightly browned. Add the lamb and cook, breaking meat up with a fork, for 10 minutes or until the meat is browned. In a small bowl, stir together the tomato paste, wine, parsley, cinnamon, salt and pepper; add to the meat and simmer, stirring frequently, until all liquid has been absorbed. Remove from heat. Melt the margarine in a medium-size saucepan; blend in the cornstarch with a whisk. Slowly stir the hot milk into the cornstarch; cook over medium heat, stirring constantly, until thickened. Cool slightly, and then stir in the beaten egg, nutmeg, and cottage cheese. Spray a 9-inch square pan with gluten-free nonstick spray. Sprinkle the bottom lightly with 2 tablespoons of the corn muffin crumbs. Arrange alternate layers of eggplant slices and meat mixture in the pan. Sprinkle each meat layer with the Parmesan cheese and remaining corn muffin crumbs. Pour the cottage cheese mixture over the top. Bake 45 minutes or until the top is golden. Cool slightly before cutting. Makes 6 (4 ½ X3-inch) serving.

    Jefferson Adams
    Nima Labs Claps Back at Gluten Free Watchdog Over Gluten Sensor Data
    Celiac.com 09/14/2018 - Celiac.com was all set to do a story on the latest peer-reviewed data on the Nima gluten testing device, when along comes Gluten-Free Watchdog with another of their famous non-recommendations. Gluten-Free Watchdog says they cannot recommend the Nima gluten test kit because of alleged flaws.
    But what does the science say? The latest Nima article and Gluten-Free Watchdog’s complaint both focus on the science, so let’s start there.
    Nima makes two different food sensors: one detects gluten, the other detects peanuts. Each sensor comprises a small, handheld electronic device and a cartridge. To test food, consumers place a pea sized amount into the cartridge, place the cartridge inside the sensor, and run the device.  They then receive a smiley face or wheat symbol with "gluten found," depending on whether or not the Nima device detected the allergen.
    Nima reported their original data in a peer-reviewed scientific journal. Among the conclusions: “Compared with reference R5, Nima antibodies (13F6 and 14G11) had 35- and 6.6-fold higher gliadin affinities, respectively. Nima demonstrated device performance using a comprehensive list of foods, assessing detection sensitivity, reproducibility, and cross-reactivity. Nima presented a 99.0% true positive rate, with a 95% confidence interval of 97.8%–100%.”
    Gluten Free Watchdog says that:
    “Based on third party testing data, the Nima Sensor fails to detect gluten at the 20 ppm level over 20 percent of the time. It isn’t until a sample contains a level of gluten at the 40 ppm level, that a gluten found result is received close to 100% of the time.” Gluten Free Watchdog suggests that this is a problem, because:
    “At a level of gluten in a sample from less than 2 ppm up to a level of gluten between 30 ppm and 40 ppm, the result displayed on the Nima Sensor may be either smiley face or gluten found. If a sample is tested with a Nima Sensor and the result is a smiley face, there is no practical way for a consumer to know if the level of gluten in the sample is less than or more than 20 ppm. If a sample is tested with a Nima Sensor and the result is gluten found, there is no practical way for a consumer to know if the level of gluten in the sample is less than or more than 20 ppm. As a result, the data point received from the Nima Sensor for gluten presents major interpretation problems.” Gluten Free Watchdog charges that Nima uses “NOT the scientifically validated Ridascreen Gliadin R5 ELISA Mendez Method from R-Biopharm used by Gluten Free Watchdog.” The fact is that R5 Elisa remains the industry standard for most testing applications. 
    Gluten Free Watchdog closes its warning with a word from their independent expert: According to Adrian Rogers, Senior Research Scientist at Romer Labs, “It could be argued that the device is not fit for purpose as the company states that there is a clear differentiation between safe and unsafe products based on a 20 ppm level which the validation data does not corroborate.”
    It’s worth noting that for all his accomplishments, Rogers is neither a doctor, nor a PhD. Rogers' LinkdIn page lists his education as: Bsc (Hons), Microbiology, University of Wales, Aberystwyth. A Bachelor of Science degree may not necessarily make an expert in this subject, yet he is presented as one.
    Rogers also seems to have a potential conflict of interest that was omitted in Thompson’s press release. Directly from Rogers’ LinkdIn site:
    “Romer Labs®, Inc. developed an immunochromatographic lateral flow assay for the qualitative detection of gluten in raw ingredients, processed foods, finished food products, and environmental surfaces, using the G12 antibody developed by Belén Morón. The G12 antibody targets a 33-mer peptide which is resistant to enzymatic digestion and heat denaturation, as well as being the fragment of the gliadin protein to which celiac disease sufferers react, making it a reliable analytical marker.” The company Rogers works for, Romer Labs, makes its own gluten testing kits. It seems a bit disingenuous for Gluten Free Watchdog to use a spokesperson from a potentially competing company to try to counteract a peer-reviewed scientific publication for a device which is made by a potential competitor.
    Nima’s Scientific Advisory Board includes some of the most highly respected celiac disease researchers and scientists in the world. They include: Peter HR Green, MD Phyllis and Ivan Seidenberg Professor of Medicine. Director, Celiac Disease Center at Columbia University; Jody Puglisi, PhD Stanford University Professor of Structural Biology; Lucille Beseler, MS, RDN, LDN, CDE, FAND Family Nutrition Center of South Florida; Benjamin Lebwohl, MD, MS Director of Clinical Research Celiac Disease Center at Columbia University; John Garber, MD Gastroenterology, Mass General; and Thanai Pongdee, MD Consultant, Division of Allergic Diseases, Mayo Clinic.
    Nima says that Gluten Free Watchdog’s view of their recently published validation is incomplete and misleading. Nima wrote:
    “All the studies show Nima is highly sensitive across a range of both low and high levels of gluten." "The Nima third party data accurately reported gluten found at 20 ppm and above between 93.3% for food as prepared (a food item that is spiked with an intended quantity of gluten) and 97.2% for food as quantified by an ELISA lab kit (used to determine the exact ppm of gluten in the food)." "The Nima peer reviewed study published in the Food Chemistry Journal reported gluten found at 20 ppm and above at 96.9% accuracy." The statement that:
    “'Nima will fail to detect gluten at 20 ppm 20% of the time' is almost entirely driven by 1 specific food out of 13 tested. That sample, when quantified, was actually below 20 ppm." "In real life, people get glutened at many different ppm levels, not just 20 ppm. Nima has been shown to detect gluten at levels below, at and above 20 ppm across a variety of foods in a number of studies.” Reading the peer reviewed data provided by Nima, and reading Gluten Free Watchdog’s complaints, it becomes clear that Gluten Free Watchdog’s complaints sound serious and authoritative, but ring a bit hollow. 
    Consider the Following Analogy
    Imagine a gluten-sniffing dog that performed as well as Nima in scientific trials; same performance, same exact data. 
    You can give this dog a sniff, or a small bite of food, and he can signal you if the food’s got gluten in it with 97% accuracy at 20ppm or below. Nearly 100% accuracy at 40ppm or above (as stated by Gluten Free Watchdog).
    People would think that the dog was not only cute and fluffy, but wonderfully helpful and everyone would love it, and everyone with celiac disease would want one. And it would be a great big gushing warm and fuzzy feel-good story. Pretty much no one would be arguing that the dog was potentially dangerous, or somehow unfit for people with celiac disease. Such dogs would also be far more expensive to own and maintain than the Nima device. Apparently such dogs can cost upwards of $16,000, not including the cost of food, vet bills, etc.
    So, what’s the accuracy rate of a gluten-sniffing dog, anyway? From Mercola.com: Willow, a German shorthaired pointer, is another gluten-sniffing dog, in this case living in Michigan. Her owner, Dawn Scheu, says she can detect gluten with 95 percent to 98 percent accuracy. She worked with a trainer (the same one who trained Zeus) to teach her own dog to detect gluten, with excellent results.
    Gluten-sniffing dogs may detect gluten in amounts as small as .0025 parts per million with 95 percent to 98 percent accuracy. So, will Gluten Free Watchdog be warning against gluten-sniffing dogs anytime soon?
    Somehow, because Nima is a mechanical device made by a company, it's not so warm and fuzzy, not so feel-good. Maybe Nima needs to shape their device like a cute little doggy, or a Pez candy dispenser?
    But the data remains, as does the fact, whatever its drawbacks, anything that detects gluten like Nima does, as well as it does, is potentially very helpful for celiac disease in numerous situations. And it is extremely unlikely to do them any harm.
    Nima seems very much committed to transparency, scientific excellence, and continual product improvement. These are noble goals and generally a win for people with celiac disease. Think of it, just ten years ago, a portable gluten-sensor with the kind of accuracy Nima is reliably achieving would have been the stuff of fantasy. Yet here it is. More accurate than any gluten-sniffing dog, and for a couple hundred bucks. People with celiac disease are living in a very different world than just a few years ago.
    Nima did not have to publish its data, but it chose to do so, and in a reputable, peer-reviewed scientific journal. Nima conducted its research using solid scientific standards, and reported those results publicly. They explained their methodology and results, they acknowledged product limitations and expressed a commitment to improvement. How is this remotely controversial?
    The celiac disease community is fortunate to have companies committed to investing time and money into products and devices that help to improve the lives of people with celiac disease. We feel strongly that the perfect should not be the enemy of the good. Devices like the Nima gluten sensor can be helpful for numerous people with celiac disease.  
    Disclosure: Nima is a paid advertiser on Celiac.com. Celiac.com's advertisers do not influence our editorial content. 
    Read Nima’s full report on test data at: Food Chemistry.com Read Gluten Free Watchdog’s Statement on the Nima device at: Glutenfreewatchdog.org Read Nima’s Reply to Gluten Free Watchdog at: Nimasensor.com

    Edward R. Arnold
    To HAIT and Back: The Musings of a Thyroid Patient on the Vagaries of Medical Diagnosis and Treatment in America
    Celiac.com 09/14/2018 - If it is really true that nobody really wants to see a grown man cry, then certainly nobody would have wanted to hang around me near the onset of a long illness whose mystery would take 14 years to solve.
    It began subtly and mildly in 1989, my 43rd year. I had just finished a long and exhausting malpractice suit on behalf of my daughter, an attractive, genetically-normal child who had contracted quadriplegic cerebral palsy in a completely avoidable incident of post-natal asphyxia which had radically changed the nature of life for my spouse and I. By the time 1989 rolled around, I was thoroughly exhausted and carrying a toxic load of anger directed at an incompetent member of the medical profession who had never learned the importance of state-of-the-art skills in a profession that literally has the power of life, death, and disability.
    From late 1989 on through 1990, I experienced strange episodes of profound sadness, usually of one to two hours duration, that became increasingly disruptive to my ability to handle a job and child-care duties. Initially, these episodes seemed to come from nowhere. Later on, I found that playing certain pieces of music of which I was fond, would send me into such intense sobbing that I would be forced to pull over if this occurred while driving.
    By the time 1991 rolled around, something was to be added to these periodic bouts of intense sadness. Early in that year, my daughter became very ill, keeping both my spouse and I awake at night for weeks on end. By the time the problem was diagnosed to be a dental infection and dental surgery was done, I had begun to have a sensation of “hollowness”, as though I really weren’t part of this world, most of the time. In late summer of that year, a series of events in which my subconscious had informed me that a friend had a serious illness, sent me into a final “dive”: I simply stopped sleeping more than about two hours per night. When I first stopped sleeping, I soon noticed that even low-level use of alcoholic beverages would further interrupt sleep and throw me into a state in which I couldn’t think of anything but how terrible I felt. This state of pronounced alcohol intolerance would continue for 14 years.
    The final blow came in November 1991, when I went into a completely disabling panic/anxiety attack that sent me to bed, cowering. I had no alternative but to seek treatment from the psychiatric profession. Unfortunately, the first two psychiatrists prescribed drugs which either had no effects, or had effects that seemed worse than the problem they were supposed to solve. The third psychiatrist, whom I stuck with for about six months, came up with a treatment plan that was partially effective (but certainly not restorative). I stayed with this psychiatrist until it became clear that his treatment was equivalent to Jefferson Airplane singing “one pill makes you larger, and one pill makes you small”. I was being jacked up every morning by a toxic, activating SSRI anti-depressant so I could semi-function, and then dropped by benzodiazepenes every night into a non-restorative twilight sleep state.
    In retrospect, the most amazing thing about these first three psychiatrists was that not one of them ordered any tests of my endocrine function. Treatment consisted solely of a series of benzodiazepenes, anti-depressants, mood stabilizers, and anti-psychotics, administered in a trial-and-error fashion that yanked my psyche and body chemistry around like a manic pit bull on a two-foot leash.
    Throughout the latter part of 1992, I transitioned to care with my primary-care physician, mostly because I trusted him more than any of the psychiatrists I had seen up to that time. He was able to stabilize me with one of the old tri-cyclic anti-depressants, doxepin, along with low doses of valium. Although doxepin packs a big morning hangover for many who use it, and has very strong anti-cholinergic effects, its ability to put me out at night helped me function satisfactorily for much of the 1990s, even at doses as low as 10mg, once daily in the evening.
    In 1993 I consulted a highly-recommended psychiatrist, who was the first psychiatrist who actually looked at my thyroid function. When my TSH was measured at 3.5, without also checking my FT3 and FT4, that doctor concluded that thyroid was not my problem. Of course, standards of thyroid diagnosis and treatment have changed radically in the 12 years since. Under the new AACE guidelines, a TSH of 3.5 would now be suspect, because studies of patients with TSH over 3.0 have shown that most progress to hypothyroidism (i.e., TSH greater than 5.5). The new AACE guidelines would mean that further testing and evaluation should be done.
    Until the fall of 1997, I continued treatment with doxepin and intermittent valium, adding the practice of meditation to help calm myself. At that time, I came back to my primary-care physician with the symptom of profound exhaustion on top of the symptoms of insomnia, anxiety, and depression I had suffered for years. Fortunately, my GP was suspicious of thyroid function, and found that my TSH was floating above 8. Since this was well above the old/traditional limit of 5.5, he was ready to start treatment, with (as would be expected of most GPs) T4-only replacement.
    I began taking thyroxine (T4) shortly thereafter with high hopes. Initially, the treatment was successful: getting the added thyroxine into my system caused an immediate improvement in quality of sleep.
    However, the use of T4 did not turn out to be an unqualified success. After use of T4 for about a month, it was apparent that use of thyroxine alone did not produce a full recovery—I still suffered from anxiety, which the medication seemed to be increasing.
    In the meantime, hair loss became an issue. Several years earlier, I had noticed that running my fingers through my hair would produce an unpleasant sensation, almost as though the hair roots were tender. By the time of my 50th birthday, in 1996, I had noticed that my pillow was virtually coated with hair by the time I would remove it for washing. Unfortunately, nobody, including my GP, reminded me that hair loss is a prime symptom of hypothyroidism; and, like most males, I was ready to assume it was plain old male pattern baldness. By the time I was treated correctly and the hair loss stopped, I had pronounced thinning on the crown which was too advanced to be reversed in response to the treatment of the thyroid problem.
    In about 1998, I began experimentation with amino acids which was to last for almost seven years. I found that use of tryptopan, 5-HTP, and GABA could reduce (but not correct) the worst of my symptoms. In retrospect, though, use of amino acids is a poor substitute for a well-functioning thyroid, as well as being expensive and inconvenient.
    By the summer of 1999, I had reached a paradoxical situation. Experimentation had shown that my body needed on the order of 100 micrograms of thyroxine (T4) to keep my TSH down to a reasonable level; yet taking that much T4 was causing intense anxiety, requiring me to use strong sleeping medications. By late summer 1999, I had noticed another distressing symptom—my acute sense of hearing was being increasingly impacted by tinnitus. Evidently, the root cause that drove me into hypothyroidism, could also impact hearing.
    It was soon after a household move in the spring of 2000, that I had a partially-disabling attack of severe epicondylitis (more commonly known as tennis elbow). It was obvious that my body was no longer able to handle the short-term stresses of the hard physical work required by a move. This obvious physical symptom, accompanied by increasing periodontal issues and continuing mental issues, prompted me to seek other treatment.
    In September 2000, I began seeing a prominent “metabolic” doctor (M.D.) who is well known for his treatment of the metabolic disorders of diabetics. This doctor has written a number of books related to dietary changes and supplements needed to stave off metabolic degeneration as one ages. I was switched to Armour thyroid, and began treatment with other hormones (primarily hydrocortisone in low doses to supplement adrenal function, and pregnenolone). I took an enormous range of nutritional supplements recommended by this doctor, and also made radical changes in diet, which I maintained for nearly two years. Unfortunately, nothing seemed to really work—I did not obtain substantial relief of my symptoms. A thyroid test in Sep 2001 still showed unsatisfactory results—my TSH was 4.7, and my FT3 was below the bottom of the normal range.
    By the spring of 2002, I had decided I would have to take my care elsewhere if there were to be progress. After doing a brief telephone consult with a naturopath outside my home state, I began seeing a naturopath in my home town for whom I had obtained very positive recommendations via a web search. By March 2002, the naturopath had informed me that testing showed my hypothyroidism was due to anti-thyroid antibodies, i.e., my body was attacking its own thyroid gland. This condition is officially known as Hashimoto’s Autoimmune Thyroiditis (HAIT—as I now know, HAIT is the leading cause of hypothyroidism). I found this discovery quite amazing; how come the three endocrinologists I had seen between 1998 and 2002, had not given me this information? I was started on Thyrolar (synthetic combination T3/T4) by the naturopath, because she said that my body’s ability to make T3 may have been compromised by HAIT.
    Soon after beginning to see the naturopath, I learned that Dr. Stephen Langer of Berkeley, CA might have additional information on the problem I had been having with thyroid hormone causing anxiety in a hypothyroid patient. I had searched for information about this syndrome in a number of places but found nothing; for instance, the well-known book “Thyroid Solution”, by Ridha Arem M.D., contains no information on the condition. So, I consulted with Dr. Langer and learned that a small percentage of people with Hashimoto’s are exquisitely sensitive to even low doses of Thyrolar. In fact, the condition is rare enough that virtually no GPs, and only a few endocrinologists, know of its existence. Apparently, it does not have an official name attached to it. I decided to refer to it as “HAIT anxiety syndrome”, although there are a few doctors who prefer to refer to any neurological symptoms accompanying HAIT as “Hashimoto’s Encephalopathy”.
    I began to feel a little better between March 2002 and June 2003. I’m not sure why the message about gluten grains had not penetrated before, but by June 2003, the naturopath reminded me again that she had seen a positive result to a test for antibodies to gliadin (one of the two major proteins in gluten grains) in 2002, and that I really should consider removing gluten grains from my diet. This recommendation was based on three factors:
    I had antibodies to the protein gliadin found in wheat and other gluten grains such as rye and barley; I had anti-thyroid antibodies which were over the threshold that defines HAIT; Medicine really is an experimental science, and this experiment, in spite of its inconvenience, appeared to be worth a try. In a numbers sense, the response of my anti-thyroid antibodies to the removal of gluten grains from my diet was slow, but gratifying. My thyroperox test started off at 25, dropped to 19 within 6 months, 7 within 10 months, and became zero in less than 2 years. I eventually concluded that the removal of gluten grains from my diet was not all that difficult, partly because I wasn’t a celiac who had to worry about that last 1%. I also concluded that removal of gluten would have a positive health effect in terms of the reduced glycemic index of the foods I consumed.
    My symptomatic improvement thereafter was not immediate. It soon became obvious that T3/T4 treatment is not an exact science, and the proportion of T3 to T4 needs to be closer to the human body’s need, not the pig’s need (Both Armour and Thyrolar have the T3/T4 ratio of one part T3 for every four parts T4, typical of the pig’s biochemistry). For instance, in late 2003, my TSH had dropped very low, i.e. I had become clinically hyperthyroid due to excess T3 as revealed by a free T3 test. I have since gone through a couple more of these “yo-yo” episodes while being treated, which is a not uncommon event—thyroid treatment is as much art as science.
    Cost of treatment also became a problem. By June 2004, I began seeing a highly-recommended Physician’s Assistant (P.A.), who was known locally to be very good at thyroid treatment, and whose clinic would accept my health insurance. I continued to see the naturopath, although at less frequent intervals, since my insurance (like most) would pay nothing for naturopathy. The P.A. and the naturopath did not completely agree on treatment methods, particularly the use of adrenal supplements (hydrocortisone and DHEA in low/biologic doses) along with thyroid supplements; but they were both in agreement that I should continue to pursue combination T3/T4 therapy. So, I blended recommendations from the two for awhile, transitioning to T3 and T4 in separate tablets of Cytomel and Synthroid, so the percentage of T3 could be altered.
    I gradually transitioned off adrenal supplements during 2005, and very gradually increased my T3/T4 supplementation over the course of the year. Finally, by September 2005, I began to realize that I truly had recovered my health—I had episodes of feeling really good again! Still, my sleep was not perfect—I had discovered what Ridha Arem M.D. has documented in the book Thyroid Solution: a return to the euthyroid state may not immediately eliminate all symptoms. After going to a small dose of the atypical anti-depressant mirtazapine, I finally could feel, every day, like I had in my 30s. Unfortunately, it had taken an agonizing 14 years to get there.
    Today, I religiously take my 10 micrograms T3, and 75 micrograms T4, split into two doses each day. I also religiously avoid all traces of gluten grains in my diet because I now understand that the gluey, hard-to-digest proteins in them are a substance which can cause major metabolic disruption. Like the co-author of the book “Dangerous Grains”, Ron Hoggan, with whom I have corresponded, I have come to realize that our society’s over-use of a potentially toxic substance isn’t just dangerous to the 1 in 133 people who have full-blown celiac disease—it can cause a very poor quality of life for the approximately 1 in 5 who have gluten intolerance. I have also come to the realization that, to those few who are unlucky enough to encounter the HAIT Anxiety Syndrome, you may require combination T3/T4 therapy to feel better; and, you may never feel as well as you did when you were young, unless you find a way to stop your immune system from waging war on your thyroid.
    Most of all, 14 years after it started, I feel as though a significant part of my life has been taken from me. I was unable get joy or pleasure from life, I was unable to work effectively, and I was unable to be the kind of parent I could have been between my 45th and 59th years of life.
    I never imagine that I would be looking forward to the relatively advanced age of 60. However, given that I now feel better than I did at anytime between the ages of 43 and 59, 60 looks like a good place to be.
    Summary:
    In retrospect, the most important things I ended up learning from 14 years of very unpleasant experience are:
    If you have psychiatric symptoms, e.g., depression, anxiety, panic disorder, etc., make sure your endocrine system is evaluated, with thyroid testing as the cornerstone. Beware of doctors who offer an antidepressant first thing, without endocrine evaluation. The emotional/psychiatric effects of hypothyroidism are just as important, and just as damaging, as the physical ones. Unfortunately, many MD’s focus on the physical. If you want to get well, you have to apply all your skills and intelligence to investigating your problem, which most MD’s may not understand. You may also have to turn to “alternative” practitioners. If your TSH is above 3.0, or maybe even 2.5, and your doctor will not do more comprehensive testing (e.g. FT3/FT4), and/or try a test run of thyroid supplementation, find another doctor. If your doctor diagnoses you as hypothyroid, demand that a test for anti-thyroid antibodies be done. If you have any antibodies, even if they are under the threshold where HAIT is considered to start, get testing for allergy to foods, and testing for allergy to common environmental toxins if food testing reveals nothing. You may find, as did I, that you won’t feel as well as possible until you free your body from antibodies.

    Jefferson Adams
    Lawsuit Claims Bob’s Red Mill Ignores RoundUp Pesticide in its Oat Products
    Celiac.com 09/13/2018 - Bob’s Red Mill finds itself under fire by two women who claim the company knowingly hides the presence of an allegedly cancer-causing weed killer in its steel cut oat and rolled oat products, and falsely advertises those products as healthy. 
    Tamara Frankel and Natasha Paracha filed a federal class action in San Francisco, alleging that parent company Bob’s Red Mill Natural Foods knows that its oat products contain or likely contain glyphosate, but fails to disclose it on the label. The women cite a recent report by the Environmental Working Group, an environmental research and advocacy group, which claimed to find traces of controversial herbicide glyphosate in Cheerios, Quaker Oats and other oat-based breakfast foods. The women contend that Bob’s uses labels such as “gluten free,” “wheat free” and “purity tested,” which lead consumers to falsely believe them to be healthy.
    Both U.S. and European regulators have concluded that glyphosate is safe, while that World Health Organization’s International Agency for Research on Cancer classifies it as a probable human carcinogen.
    Bayer subsidiary Monsanto, maker of the glyphosate-based herbicide Roundup has faced numerous lawsuits over its product.  A San Francisco jury recently found that exposure to Roundup caused the cancer of a school groundskeeper, and awarded him $289 million in damages. Shortly after that verdict, the Environmental Working Group released a report claiming that 31 of 45 oat-based food samples tested positive for glyphosate, and that levels exceeded safety limits of 160 parts per billion.
    EWG applies a more stringent standard than the 2 mg/kg/day of glyphosate standard used by the U.S. Environmental Protection Agency, and the 1.1 mg per day standard used by the State of California.
    Frankel and Paracha are represented by Patricia Syverson of the San Diego law firm Bonnett, Fairbourn, Friedman & Balint.
    Stay tuned for more developments on this and related stories.

  • Posts

    • Victoria, It can be.  Up to 40% of Celiac's have some Neurologic/Psychriatric issues. Here is the research on the anxiety and depression issues common in celiac's entitled "Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/ I used to have terrible anxiety (un-natural anxiety) almost to the point of a panic attack. Taking Zinc lozenges (they self regulate) with a metalic taste in your mouth helped many of my anxiety issues. Later (or around the same time I cant remember now) I learned magnesium and B-Vitamins could also help. Taking a B-complex as I think Ennis_tx mentioned (in another thread) and taking Magnesium Citrate helped many of my depression issues. Here is a good article that explains some of the vitamins/minerals that some one can take that can help anxiety and depression issues entitled "The Role of Vitamins and Minerals in Psychiatry" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/ I hope this is helpful but it is not medical advice. Low Iron is also common (IDA) in celiac's and has been shown to be associated with panic attacks. Here is the research on low Iron and B-6 entitled "Low serum concentrations of vitamin B6 and iron are related to panic attack and hyperventilation attack" https://www.ncbi.nlm.nih.gov/pubmed/23603926 I didn't know any of this then.  But it is not all in your head as doctor's some times are prone to say. The anxiety is real! Again I hope this is helpful and good luck on your continued journey. There is hope I used to be you!  Waking up on the "wrong side" of the bed. . . days in a row never knowing why? At least you know how gluten is effecting you or are at least right to suspect it and you can avoid it. . . . And sometimes just avoiding the issue once you have identified it is easier than dealing with the after math. And why would you want too anyway? It is not all in your head!  Be your own advocate! Note/Remeber the research was on the "Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity"  which you seem to have.  You don't need to be full blown (officially) diagnosed celiac for gluten to affect you poorly as you are noticing. Again I hope this is helpful but this is not medical advice just some of the things I found helped me.  And if they help you.  Pay it forward and tell others. I wish I knew some of these things years and years ago as many of us do on this forum and why we still participate/share our experiences to help those still looking for answers sadly we had to find out on our own too often! 2 Timothy 2: 7  “Consider what I say; and the Lord give thee understanding in all things” this included Posterboy by the grace of God,
    • Hi Victoria! Consider getting retested for celiac disease provided you are still eating gluten daily.  Children of celiacs should be retested every few years even if they have no obvious symptoms.   https://www.gluten.org/branchnews/relatives-tested-celiac-disease/ https://www.ncbi.nlm.nih.gov/pubmed/24552206
  • Forum Statistics

    • Total Topics
      110,929
    • Total Posts
      952,605
  • Blog Entries

  • Topics

  • Blog Statistics

    • Total Blogs
      1,144
    • Total Entries
      1,971
  • Upcoming Events

×