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

[spirit-walk]

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.

 

 

[1desperateladysaved]

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

[spirit-walk]

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.

[w8in4dave]

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! 

[nvsmom]

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.

[spirit-walk]

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?

[nvsmom]

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!

[spirit-walk]

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.

[nvsmom]

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.

[w8in4dave]

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.”

[spirit-walk]

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. 

[w8in4dave]

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!!! 

[GottaSki]

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! 

[spirit-walk]

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.

[kareng]

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.

[spirit-walk]

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.

[GottaSki]

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

[spirit-walk]

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.

[GottaSki]

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. 

[spirit-walk]

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.

[spirit-walk]

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.

[spirit-walk]

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.

[GottaSki]

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

[spirit-walk]

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.

[GottaSki]

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.