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Suggestions please,

I have been gluten free for 6 years and feel fairly confident about cross contamination, hidden gluten, my medications, toothpaste, lipstick, salad dressing, etc.  I rarely eat out and when I do, it is at a restaurant that can be trusted to be thorough (well, as much as that is possible).

And yet, I feel so tired, migraines, aching joints, brain fog, and words not coming out right when I talk.  My GI ran many blood tests which came out normal except for low magnesium level and the presence of tTg in higher levels.  When the assistant called, she began the conversation with a condescending lecture about cheating on the gluten free diet.  I about lost it, but didn't.  I let her know that I do not cheat and am diligent about what goes in and on my body.  A follow up appointment has been made for 12 weeks out along with another intestinal biopsy.  In the meantime, I am going through everything to find any hidden sources of gluten I may not be aware of.  I am supposed to hear from a dietician but haven't yet.  (I met with one early on in my diagnosis.)

Salad dressings - any really good certified gluten-free ones?  Are the vinegars used in them okay or no?

I have changed my coffee and coffee maker out.  I use  Coffee Mate sweet Italian creamer.  It states it is gluten free, but, has anyone else had problems?

I have checked and rechecked my Rx pills as well as any OTC meds and supplements.

I WAS eating Quaker Oats chocolate rice cakes (gluten free is stated on the packing but not certified) and suspect them; however, I stopped a couple of weeks ago and do not feel much better. (Migraine and brain fog yesterday along with joint pain).

Has anyone else gone through this?  What do you suggest I do?  I would like to reeducate the nurse/assistant at my GI  on her assumption that everyone must "cheat" and her lecture (I put in a call to my GI but was told by the nurse that she doesn't talk to patients outside of appointments ???)

In all the blood work I have had done, my tTg levels are high.  Am I non responsive to the diet?  Ultra sensitive?  

Thanks for feedback.

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How high is the ttg?  If it isn't only slightly elevated, it could be from something else?

 

Anti-tissue transglutaminase (tTG-IgA)

A screening test is commonly used when an individual is in a risk group for celiac disease, whether or not he or she has symptoms. The tTGIgA test is usually the one offered for celiac screening events, as it is the most sensitive test available. In fact, it is generally believed that about 98% of people with celiac disease have a positive tTG test. While the tTG test is very specific, it also can produce false positive results on occasion. Indeed, some people with Type 1 diabetes, Hashimoto’s thyroiditis, and autoimmune liver conditions are especially likely to have elevated tTG without having celiac disease.

http://www.cureceliacdisease.org/screening/

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I'd get all of the bloodwork reports for the past six years from the doctor. I'd look at TTG to see if it has been drifting up/down or just went high this year. If it just went high this year then either one of your goto foods isn't gluten free like it used to be or something you added on this year isn't gluten free enough even though it says it is.

You could use a gluten tester like Nima to check foods you eat regularly or switch to a whole foods diet for 3 months and recheck your TTG.

And, as kareng says, it could be something else.

 

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I do not have any answers for you, but I have many theories.  I have been gluten free for over four years.      My house is gluten free because my hubby has been gluten free for 16 years (not diagnosed, but gluten is an issue for him and what nut would stay on the gluten-free diet if there was not a benefit?)  I seem to be more sensitive than him.  I have had two major hits from gluten since my diagnosis.  Both occurred during summer while on extended vacations (though one started before I left home).  Symptoms were severe and different, so my GI checked my DGP IgA levels and they were off the charts.  All other celiac tests have always been negative.  I typically hunker down to a very restrictive diet of meat, fish, veggies and fruit.  Nothing processed.  Once recovered, I stray back to dairy and then the occasional gluten-free treats that I bake myself.  Then....I go for chips and other gluten-free processed foods.  I am careful because I do have diabetes which is controlled by my diet.  It keeps me on the "eat in moderation" mode.  

In January, I had a tooth/sinus infection that was a disaster.  Antibiotics, flu, a viral cold, all within weeks.  An extraction,  bone grafting, and a retainer to keep my teeth in line to prep for an implant.  I developed hives and intestinal pain.  Hives all over my body.  Every single day by mid-afternoon.  It was crazy, but managed by antihistamines.  Six months and they finally went away.  My GI measured my DGP and once again, it was off the charts as were my thyroid antibodies and my Immunoglobulin A (IgA).   I have no clue as to what glutened me.  Perhaps, my DGP never went down.  It has ALWAYS been elevated, but I can tell you that I have had bouts of recovery for long stretches based on symptom reduction or elimination.   I suppose I could have demanded testing on a regular basis, but let's face it, celiac disease is autoimmune and there is no cure.  I went for how I felt as a basis for my recovery.  I have taken that approach with my Hashimoto's diagnosis too.  

Now, I have have an endoscopy planned in a few weeks.  Why?  Because I am going crazy trying to determine my gluten source.   I have been dealing recently with reflux and vertigo (never experienced before) and I eat very little processed foods. I do not eat out.   I am the gluten police, yet I am either getting cross contaminated, am very sensitive, or I am developing another AI issue.  

So my current theory is that some of us really are super sensitive.  Why?  Because if you look at the research that helped determine the 20 parts per million, it served most celiacs, but not all.  Probably most celiacs go on to recover and do well with processed gluten free foods, but some do not.  Obviously, researchers found that out and therefore developed a gluten-free restrictive diet (aka Fasano diet) and they were able to reduce the number of refractory celiac disease cases.   The bottom line is that  I think that celiac researchers really do not know  everything about celiac disease yet.  All the celiac expert doctors concur.  

I will find out if my villi have recovered and to rule out celiac disease for my latest symptoms.  I am consuming processed gluten free certified foods to insure an accurate result.  My hunch is that I am going to have to adhere to the restricted gluten-free diet or blunder along as I have been doing.  Something I would be willing to do to avoid a refractory diagnosis.  I am hoping for a positive result, like member Peter who has been an inspiration to me and normal villi after five years!  

I was going to wait until after my biopsies to report my findings, but I wanted to let you know that you are not alone.  I am sure there are many others on the forum who are in the same boat.  Our forum goal (speaking for myself) is to connect and help others.  We dish out common sense advice and share our experiences.  That advice can be applied to MOST celiacs.  Read labels and you should be fine.  Reduce your risk for exposure.  Take your advice from seasoned celiac disease veterans and pay heed to those who suffer from ataxia or DH.  They are our canaries.  

Jane Anderson writes more on this subject.  She is very conservative on her gluten-free diet approach.  She has to be because she has DH.  I know some members disagree with Jane's conservatism, but after my bout of hives, I can tell you I would do anything (even stand on my head) to avoid itching that that.  

https://www.verywell.com/why-gluten-ppm-numbers-matter-562484

Conclusion?  celiac disease is a crazy disease.  What is great,  compared to other AI issues (e.g. Lupus), is that we know the trigger for a flare-up -- gluten.  But we still need to explore and determine diet and lifestyles that work for each individual as we are all different.  There is no "cookie cutter" or "one-size-fits-all" approach.  I hope you figure it out and I will let everyone know the results of my endoscopy.  

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There are many do-it-yourself diseases out there. People with diabetes use a meter to keep an eye on their levels. Celiac is very much a do-it-yourself disease in that it's up to the patient to keep their disease under control. One way is symptoms and the other way is checking one of the blood test levels regularly. It's not done (or recommended), but I think people should check their number every 3 months until they hit normal, then check anytime they get a symptom and every 3 months after, until they get their numbers back down again. Celiac is very much cause and effect. It's hard to find the cause when the effect is gradual, but it should show up in the numbers.

This way refractory doesn't sneak up on someone after years of having celiac. As I am not a big fan of visiting doctors I order my own blood tests (and still visit the doc yearly). Eventually I will stop visiting the doc yearly and just keep an eye on the numbers.

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Hi jewels........in all that blood work they did, did they run one called the DGP/IgA or AGA/IgA?  Either test will tell you if you are consuming gluten in your diet, not the tTg.  As tTg can be elevated by other autoimmune conditions, you won't know if it is your diet until you have the results of the ones I mentioned.  Please check into that because if this testing is negative, low negative, then it is not your diet and you can tell that smarmy assistant to re-learn her job and stop lecturing people!  ;)

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1 hour ago, cyclinglady said:

I do not have any answers for you, but I have many theories.  I have been gluten free for over four years.      My house is gluten free because my hubby has been gluten free for 16 years (not diagnosed, but gluten is an issue for him and what nut would stay on the gluten-free diet if there was not a benefit?)  I seem to be more sensitive than him.  I have had two major hits from gluten since my diagnosis.  Both occurred during summer while on extended vacations (though one started before I left home).  Symptoms were severe and different, so my GI checked my DGP IgA levels and they were off the charts.  All other celiac tests have always been negative.  I typically hunker down to a very restrictive diet of meat, fish, veggies and fruit.  Nothing processed.  Once recovered, I stray back to dairy and then the occasional gluten-free treats that I bake myself.  Then....I go for chips and other gluten-free processed foods.  I am careful because I do have diabetes which is controlled by my diet.  It keeps me on the "eat in moderation" mode.  

In January, I had a tooth/sinus infection that was a disaster.  Antibiotics, flu, a viral cold, all within weeks.  An extraction,  bone grafting, and a retainer to keep my teeth in line to prep for an implant.  I developed hives and intestinal pain.  Hives all over my body.  Every single day by mid-afternoon.  It was crazy, but managed by antihistamines.  Six months and they finally went away.  My GI measured my DGP and once again, it was off the charts as were my thyroid antibodies and my Immunoglobulin A (IgA).   I have no clue as to what glutened me.  Perhaps, my DGP never went down.  It has ALWAYS been elevated, but I can tell you that I have had bouts of recovery for long stretches based on symptom reduction or elimination.   I suppose I could have demanded testing on a regular basis, but let's face it, celiac disease is autoimmune and there is no cure.  I went for how I felt as a basis for my recovery.  I have taken that approach with my Hashimoto's diagnosis too.  

Now, I have have an endoscopy planned in a few weeks.  Why?  Because I am going crazy trying to determine my gluten source.   I have been dealing recently with reflux and vertigo (never experienced before) and I eat very little processed foods. I do not eat out.   I am the gluten police, yet I am either getting cross contaminated, am very sensitive, or I am developing another AI issue.  

So my current theory is that some of us really are super sensitive.  Why?  Because if you look at the research that helped determine the 20 parts per million, it served most celiacs, but not all.  Probably most celiacs go on to recover and do well with processed gluten free foods, but some do not.  Obviously, researchers found that out and therefore developed a gluten-free restrictive diet (aka Fasano diet) and they were able to reduce the number of refractory celiac disease cases.   The bottom line is that  I think that celiac researchers really do not know  everything about celiac disease yet.  All the celiac expert doctors concur.  

I will find out if my villi have recovered and to rule out celiac disease for my latest symptoms.  I am consuming processed gluten free certified foods to insure an accurate result.  My hunch is that I am going to have to adhere to the restricted gluten-free diet or blunder along as I have been doing.  Something I would be willing to do to avoid a refractory diagnosis.  I am hoping for a positive result, like member Peter who has been an inspiration to me and normal villi after five years!  

I was going to wait until after my biopsies to report my findings, but I wanted to let you know that you are not alone.  I am sure there are many others on the forum who are in the same boat.  Our forum goal (speaking for myself) is to connect and help others.  We dish out common sense advice and share our experiences.  That advice can be applied to MOST celiacs.  Read labels and you should be fine.  Reduce your risk for exposure.  Take your advice from seasoned celiac disease veterans and pay heed to those who suffer from ataxia or DH.  They are our canaries.  

Jane Anderson writes more on this subject.  She is very conservative on her gluten-free diet approach.  She has to be because she has DH.  I know some members disagree with Jane's conservatism, but after my bout of hives, I can tell you I would do anything (even stand on my head) to avoid itching that that.  

https://www.verywell.com/why-gluten-ppm-numbers-matter-562484

Conclusion?  celiac disease is a crazy disease.  What is great,  compared to other AI issues (e.g. Lupus), is that we know the trigger for a flare-up -- gluten.  But we still need to explore and determine diet and lifestyles that work for each individual as we are all different.  There is no "cookie cutter" or "one-size-fits-all" approach.  I hope you figure it out and I will let everyone know the results of my endoscopy.  

You know, cyclinglady, that with Celiac AND Hashi's, the hives problem might just be from those 2 and nothing else.  Add in that stress from the tooth construction (I know that routine all too well myself) and you have a relapse of symptoms. 

The past 2 years have been hell for me and yes, I have bouts of hives.  Not all over like you, but even one is bad enough.  They are getting better with treatment for my allergies and the stress of losing my brother and father is also subsiding a bit. But stress is deadly for people with autoimmune disease, as you know. People become more sensitive to things they eat when totally stressed out because stress messes up your gut, with or without gluten.  Is it possible you have other food sensitivities?  It would have to be a continuous source of gluten to keep the DGP elevated for a long time so this must be driving you crazy.  :(

I wish you the best of luck with the endo and hope it gives you the answers you need to get better! 

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50 minutes ago, tessa25 said:

There are many do-it-yourself diseases out there. People with diabetes use a meter to keep an eye on their levels. Celiac is very much a do-it-yourself disease in that it's up to the patient to keep their disease under control. One way is symptoms and the other way is checking one of the blood test levels regularly. It's not done (or recommended), but I think people should check their number every 3 months until they hit normal, then check anytime they get a symptom and every 3 months after, until they get their numbers back down again. Celiac is very much cause and effect. It's hard to find the cause when the effect is gradual, but it should show up in the numbers.

This way refractory doesn't sneak up on someone after years of having celiac. As I am not a big fan of visiting doctors I order my own blood tests (and still visit the doc yearly). Eventually I will stop visiting the doc yearly and just keep an eye on the numbers.

I agree with you completely!  I think it's great that there are resources where a person can have blood tests done without doctor involvement because you can't always find one who is on board with things.  Or for those without insurance or a doctor for a period of time.  You are correct in that Celiac and many other chronic diseases are do-it-yourself, in many ways. I have always said that the American medical system is the best in the world when it comes to emergency medicine but sorely lacking in chronic disease management......that's where the patient comes in and does their homework!

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Food Diary, Elimination Diet time....I hate those when you get something making you sick and you suspect everything and go OCD crazy cleaning and checking everything. On one of these right now and just learned my issues. >.< I was on antibiotics for several months for a infection, seems it led to a candidia overgrowth, and BAM new food intolerance popping up again.

Mean time I can only suggest what I am doing also, extra enzymes, b-vitamins, and magnesium and ride out the storm, writing down and narrowing down my potential new culprits on the food diary.

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Oy, that is not fun.

I'd go super uber strict for a month or so. cut out all processed stuff (or as much as humanly possible) and stick to safe "whole foods" That should tell you if you're reacting to a pre-made product that might be in the 20ppm limit but still have trace amounts. (I'd be suspicious of any quaker stuff, personally. Not sure if they use pure oats or not). 

If that doesn't help things, good to look at other intolerances: dairy, soy, nightshades, etc. 

Then there's always the possibility that it's something else completely. For the longest time I was sure my achy days were just another celiac thing. NOPE! FIBROMYALGIA! yey.

Anyway, hope you can get to the bottom of it.
Feel better!!

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12 hours ago, kareng said:

How high is the ttg?  If it isn't only slightly elevated, it could be from something else?

 

Anti-tissue transglutaminase (tTG-IgA)

A screening test is commonly used when an individual is in a risk group for celiac disease, whether or not he or she has symptoms. The tTGIgA test is usually the one offered for celiac screening events, as it is the most sensitive test available. In fact, it is generally believed that about 98% of people with celiac disease have a positive tTG test. While the tTG test is very specific, it also can produce false positive results on occasion. Indeed, some people with Type 1 diabetes, Hashimoto’s thyroiditis, and autoimmune liver conditions are especially likely to have elevated tTG without having celiac disease.

http://www.cureceliacdisease.org/screening/

I have called my Gastro's office and asked for copies of my tTg test reports over the years.  I was told by the assistant that these reports would not tell me what I was ingesting with gluten (duh) and that I really needed to go see a dietician.  (Because my being the gluten police, reading labels, researching which foods are really gluten-free must not be enough, right?  I must be "cheating" on the diet.  As if that were the ONLY explanation for elevated tTg levels. SMH.)  Perhaps the standard of 20 ppm is on high for some.  Thanks for your response.

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5 minutes ago, Jewels50 said:

I have called my Gastro's office and asked for copies of my tTg test reports over the years.  I was told by the assistant that these reports would not tell me what I was ingesting with gluten (duh) and that I really needed to go see a dietician.

Wow, she sounds like a winner! I always ask for copies of all reports for my records. Why? Because I can. :P

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9 hours ago, Gemini said:

Hi jewels........in all that blood work they did, did they run one called the DGP/IgA or AGA/IgA?  Either test will tell you if you are consuming gluten in your diet, not the tTg.  As tTg can be elevated by other autoimmune conditions, you won't know if it is your diet until you have the results of the ones I mentioned.  Please check into that because if this testing is negative, low negative, then it is not your diet and you can tell that smarmy assistant to re-learn her job and stop lecturing people!  ;)

Hi Gemini, great information and I will ask.  

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9 hours ago, Ennis_TX said:

Food Diary, Elimination Diet time....I hate those when you get something making you sick and you suspect everything and go OCD crazy cleaning and checking everything. On one of these right now and just learned my issues. >.< I was on antibiotics for several months for a infection, seems it led to a candidia overgrowth, and BAM new food intolerance popping up again.

Mean time I can only suggest what I am doing also, extra enzymes, b-vitamins, and magnesium and ride out the storm, writing down and narrowing down my potential new culprits on the food diary.

Yes, back to a restricted diet.  I am also doing the (tried and true for me) probiotic, magnesium, herbal /holistic approach to leaky gut regime and re, re, re researching how many ppm of gluten are in foods I eat.  A food diary will help.  Thanks!

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Hi Tessa25, thank you for all your input and help with this!  Yeah, the more I deal with this assistant, the more I am convinced she makes incorrect assumptions and generalizations.  She postulated today that the dietician hasn't called me yet because "they are probably trying to figure out my insurance".  Because, you know in these days of high speed internet and insurance websites to confirm benefits, it takes AT LEAST 10 business days (and counting) to do so.

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Well, jewels........there is one thing I am certain you have.......a great sense of humor! It will serve you well!  :lol:

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I quit eating the Quaker chocolate rice cakes also.  Not sure what is in them that makes me sick but they sure don't agree with me.  Awhile later I stopped all flavored rice cakes as they didn't work no matter what flavor they were.

But I can eat plain old rice fine.

I hope one of the tests they did was thyroid levels?  That being off can sure make you feel tired.  Another thing that might help is quitting coffee/caffeine for a month or so, and trying some selenium or Brazil nuts.

If you are eating soy cut it out also and wait a month for symptoms to change.  Same with nightshades.

If it is a food related issue you can find it with patience and diet changes.  Yep, you can! :)

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Thank you all for your replies and suggestions!

I did get a copy of my lab results.  3 were done in the past 6 years.  Yes, 3.  Oh I have had blood drawn lots but only 2 were a panel of tests for Celiac (2011 & 2012), but this last one done (2017) was just for tTg.  My tTg was 5 on the most recent test.  Down from 32 back in 2011.

I have questions for my gastro - why wasn't a full panel of celiac testing done at the most recent blood draw?  5 years between tests - is that normal?  If my tTg is at 5, how can you possibly decide that I am "cheating"?  (5 is low positive for Celiac - anything under 3 is considered normal with this particular lab).  Could it be cross contamination?  Could it be something like the Quaker rice cakes, that say they are gluten-free, but might not be?  How about the so called gluten-free salsa?  I eat Boars Head meats but recently saw that their gluten levels are closer to the 20 ppm range.  Am I more sensitive to gluten levels?  I will ask that they run a full panel.  I get a lot of push back in "your insurance company won't approve it" - so what??  I will pay for it myself!

What is the name of the test that has been found to be the most accurate?  Is it DGP/IgA or AGA/Ig?  EMA?

I did order Nima but have not received the device yet.  

STILL waiting for the dietician to call...<_< 

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7 minutes ago, Jewels50 said:

What is the name of the test that has been found to be the most accurate?  Is it DGP/IgA or AGA/Ig?  EMA?

The test you should monitor is the one that is most sensitive for you. It's different for everyone. In my case the most sensitive/quick reacting test is TTG IGG. But people say you should use the DGP test.

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40 minutes ago, tessa25 said:

The test you should monitor is the one that is most sensitive for you. It's different for everyone. In my case the most sensitive/quick reacting test is TTG IGG. But people say you should use the DGP test.

I agree.  I ONLY have tested positive on the DGP IgA.  Even in all follow-up testing (four years).   The TTG could be elevated by other AI issues.  Again, COULD, because I have active Hashi's (another AI) and my TTG is never elevated.  

Some studies do suggest that the DGP would be better for dietary compliance.  Some people are seronegative.  My thinking?  There is no "cookie cutter" testing for compliance.  We are all so different.   Use what works for you.  Antibodies testing is just one tool.  

I am getting another endoscopy because I need to know if my elevated DGP is correlated to villi damage or not.  

Edited by cyclinglady

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Really some super feedback on this thread!

Jewels, I have dh & test negative on blood work as 60% of us with dh do. My household is strictly gluten free as there are only my hubs & myself & wonder of wonders, my hubs also has celiac (dx 5 months after myself b/c I then recognized the symptoms). Hubs is doing great & he eats gluten-free processed foods but nothing from Quaker or General Mills. I am 5.5 years gluten-free now and was doing very well on a "normal" gluten-free diet. All my physical symptoms had resolved with the exception of some lingering dh, albeit much, much, much milder than it had been. In 2014 I got the ATK How Can it be Gluten Free cookbook & went nuts making breads, biscuits, pancakes, waffles, coffee cake, you name it. Many of those recipes use oat flour. Oh boy! All my symptoms returned. I figured out it had to be the oat flour. So I quit that, symptoms resolved. Then we got some Udi's bread, no oat flour in the ingredients list. Whadda ya know, I began reacting again. WHY????? Drove myself insane trying to figure it out. Short of doing an endoscopy, the only way to verify I wasn't having psychosomatic reactions was to check my vitamin/mineral levels. Thankfully, I had had them done after I recovered from the oat flour episode so knew they were all good at that time. This time my Vit A was tanked and several others were on the low side of low. Thank goodness I could verify it truly wasn't all in my head!!!! The only thing I was doing was eating Udi's so one day it dawned on me to research gluten-free processed flours & foods for oats cc. One of the things I did was call Udi's & ask if the bread was made on lines shared with products containing even purity protocol grown oats. Yes, indeedy was the answer I received. They told me they only clean the lines after making something containing the top 8 allergens so they would not even be cleaning the lines after making a product containing oats. My research led me to discover that virtually all gluten-free flours would be tainted with gluten-free oats. BRM uses both purity protocol oats as well as mechanically sorted gluten-free oats and that's all in the same gluten-free facility. Most if not all of the gluten-free product makers use flours they get from BRM. Even if they don't, the cc with oats/oat flour is pretty much industry wide.  Fast forward and this time I wasn't healing even though I had been eating only naturally gluten-free foods such as canned or frozen fruits & veggies & so forth but no gluten-free baked goods or mixes, so was put on the Fasano gluten cc elimination diet. I began that the end of Oct. of 2016. So you can say I'm a super, super, sensitive. I don't think I started out that way but it's what I have become ~~ both to oats as well as the slightest, tiniest microcosm of gluten. I was doing excellently on the Fasano diet. I did it religiously for over 8 months. Then I began to add one thing at a time to test things. I had discovered that I had developed an intolerance to peanuts. I have not been able to tolerate Gatoraid. I am slowly finding intolerances and I have not yet tried any gluten-free processed baked goods or flours or grains. I am just working on single ingredients for testing other than Baker's Angel Flake shredded coconut which I seem to be doing okay with. I'm trying to pick things that will give me the most bang for my buck with weight gain as all I had gone through had taken me down to 86 lbs. from the 91 lbs. I had been prior to the first oat flour incident. I need to be 105 or 110 but I don't see that happening for a long, long time, if ever. Every time I hit an "episode" I immediately lose a minimum of 5 lbs. and it takes well over 6 months before I begin to gain anything back again. So it's going to be a long haul for me to add "naturally" gluten-free foods back. Stuff like tomato sauce is at the bottom of the list as the things that will put lbs. on me take priority. 

I didn't mean to take over this thread and apologize if it seems so. I'm really trying to give you (& others) an example of how we can change over time. We know our gluten reactions can change drastically each time we get glutened but I have discovered, with myself at least, that our sensitivity can change drastically.

Disclaimer:

I don't want newbies to read what I just wrote & freak out thinking the same will happen to them. MOST of the time it will not!!! There are tons of celiacs who never experience the extremes I am. Gemini is a perfect example of that. She has been gluten-free for I think 11 or 12 years & she's doing GREAT and eats NORMAL gluten-free foods that are under 20ppm.

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33 minutes ago, squirmingitch said:

Really some super feedback on this thread!

Jewels, I have dh & test negative on blood work as 60% of us with dh do. My household is strictly gluten free as there are only my hubs & myself & wonder of wonders, my hubs also has celiac (dx 5 months after myself b/c I then recognized the symptoms). Hubs is doing great & he eats gluten-free processed foods but nothing from Quaker or General Mills. I am 5.5 years gluten-free now and was doing very well on a "normal" gluten-free diet. All my physical symptoms had resolved with the exception of some lingering dh, albeit much, much, much milder than it had been. In 2014 I got the ATK How Can it be Gluten Free cookbook & went nuts making breads, biscuits, pancakes, waffles, coffee cake, you name it. Many of those recipes use oat flour. Oh boy! All my symptoms returned. I figured out it had to be the oat flour. So I quit that, symptoms resolved. Then we got some Udi's bread, no oat flour in the ingredients list. Whadda ya know, I began reacting again. WHY????? Drove myself insane trying to figure it out. Short of doing an endoscopy, the only way to verify I wasn't having psychosomatic reactions was to check my vitamin/mineral levels. Thankfully, I had had them done after I recovered from the oat flour episode so knew they were all good at that time. This time my Vit A was tanked and several others were on the low side of low. Thank goodness I could verify it truly wasn't all in my head!!!! The only thing I was doing was eating Udi's so one day it dawned on me to research gluten-free processed flours & foods for oats cc. One of the things I did was call Udi's & ask if the bread was made on lines shared with products containing even purity protocol grown oats. Yes, indeedy was the answer I received. They told me they only clean the lines after making something containing the top 8 allergens so they would not even be cleaning the lines after making a product containing oats. My research led me to discover that virtually all gluten-free flours would be tainted with gluten-free oats. BRM uses both purity protocol oats as well as mechanically sorted gluten-free oats and that's all in the same gluten-free facility. Most if not all of the gluten-free product makers use flours they get from BRM. Even if they don't, the cc with oats/oat flour is pretty much industry wide.  Fast forward and this time I wasn't healing even though I had been eating only naturally gluten-free foods such as canned or frozen fruits & veggies & so forth but no gluten-free baked goods or mixes, so was put on the Fasano gluten cc elimination diet. I began that the end of Oct. of 2016. So you can say I'm a super, super, sensitive. I don't think I started out that way but it's what I have become ~~ both to oats as well as the slightest, tiniest microcosm of gluten. I was doing excellently on the Fasano diet. I did it religiously for over 8 months. Then I began to add one thing at a time to test things. I had discovered that I had developed an intolerance to peanuts. I have not been able to tolerate Gatoraid. I am slowly finding intolerances and I have not yet tried any gluten-free processed baked goods or flours or grains. I am just working on single ingredients for testing other than Baker's Angel Flake shredded coconut which I seem to be doing okay with. I'm trying to pick things that will give me the most bang for my buck with weight gain as all I had gone through had taken me down to 86 lbs. from the 91 lbs. I had been prior to the first oat flour incident. I need to be 105 or 110 but I don't see that happening for a long, long time, if ever. Every time I hit an "episode" I immediately lose a minimum of 5 lbs. and it takes well over 6 months before I begin to gain anything back again. So it's going to be a long haul for me to add "naturally" gluten-free foods back. Stuff like tomato sauce is at the bottom of the list as the things that will put lbs. on me take priority. 

I didn't mean to take over this thread and apologize if it seems so. I'm really trying to give you (& others) an example of how we can change over time. We know our gluten reactions can change drastically each time we get glutened but I have discovered, with myself at least, that our sensitivity can change drastically.

Disclaimer:

I don't want newbies to read what I just wrote & freak out thinking the same will happen to them. MOST of the time it will not!!! There are tons of celiacs who never experience the extremes I am. Gemini is a perfect example of that. She has been gluten-free for I think 11 or 12 years & she's doing GREAT and eats NORMAL gluten-free foods that are under 20ppm.

Your oat issues reminded me of mine, I was in denial for my first year that the gluten-free oatmeal was causing problems, and even secondhand exposure was causing me issues. Seems I am one of those 10% celiacs that react to it as well, I even ended up phasing oat flour out of my bakery, It always tested gluten-free, and some of my customers loved it but I was always a mess the next day after making something with it, like completely scatter brained felt like a zombie just dazed for the next day or 2 then it would randomly come back and hit me later -_-. Only source of oats in my house now is Van cereal for my cousins and a friend when they stop by (I treat it like gluten and handle with gloves and a mask lol) and I have a large flour bin with a premixed batch using the last of my grain flours for chocolate brownies we sell by custom order at my bakery (use make double chocolate brownies and add strawberry or cherry puree swirls to them and call them Chaos Brownies)

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Okay, great information about the tests.  

16 hours ago, Ennis_TX said:

The test you should monitor is the one that is most sensitive for you. It's different for everyone. In my case the most sensitive/quick reacting test is TTG IGG. But people say you should use the DGP test.

Good to know!  After the initial gluten challenge I was positive for DGP IgA, TTG IgA, EMA IgA.

 

16 hours ago, squirmingitch said:

My research led me to discover that virtually all gluten-free flours would be tainted with gluten-free oats. BRM uses both purity protocol oats as well as mechanically sorted gluten-free oats and that's all in the same gluten-free facility. Most if not all of the gluten-free product makers use flours they get from BRM. Even if they don't, the cc with oats/oat flour is pretty much industry wide.  

I am smacking my head!  I too am one of the 10% who cannot eat ANY oats.  My husband uses a gluten-free bread mix to make gluten-free bread.  It is possible that it has some trace amounts of oats in it as the manufacturer also makes things with gluten-free oats.  (Personally, I grew up on a farm and I do not see oats becoming gluten-free being "mechanically sorted".  Oats grow in wheat/barley fields and vice versa.). Thank you for this feedback and the research you have done!  

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You're so welcome Jewels! It's literally taken me years to rat it all out. I can't tell you how many calls & emails I made besides spending reams of hours on the computer doing the pre leg work before calls or emails. Thing is, when all is said & done, I can't definitively say whether it's oat cc or minutia of gluten OR BOTH that get me because I can't find pure flours free from any trace possibility of oats in order to test the theory. I too am leery of the mechanical sorting of oats but that's a moot point for me anyway. 

My husband uses a gluten-free pancake mix & I measure the liquid ingredients, mix them, & he takes the dry mix out onto the back porch & measures & mixes it into the wet ingredients. Once it's all wet then I can deal with it from there & pour the mix into the skillet & make his pancakes. You could do the same kind of process with the bread your hubs makes.

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