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ironictruth

positive dgp not celiac

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In reading the forums I often find old posts of people undergoing testing who vanish and I always wonder what happened. I appreciate the support I have been provided. The only thing I want to remind everyone of is that no test is 100% totally sensitive and accurate all of the time. 

My story: 

I had blood drawn because my brother was diagnosed with celiac. He was serology negative, positive biopsy. I had two weak positive DGP IGA's in 2015. All other celiac tests were negative. At this point, I am totally fine. Just doing the labs per brother's suggestion. I was then gluten free for 8 months at advice of primary doc (bad advice). I became curious about whether or not I really needed to do this and went back on gluten for 6 weeks, had a scope, and everything was perfect. Doc told me because I have the DQ2 gene and a brother with the disease to go gluten free (bad advice). 

Fast forward months later and I am eating gluten free (still dining out) but getting all sorts of weird symptoms. Nausea, pain/pressure in right rib cage, head pressure (the brain squeeze). I ended up in the hospital with high anion gap and the GI did another scope and found duodenitis, no villi blunting. 

While in the hospital they did a celiac panel. This particular panel uses a  Combined DGP essay. So they combined the IGA and IGG, they don't separate it out.  It comes back moderate positive range. All other tests negative. So I am like...hmmmmm....wth???

 So over the course of the next several months I have every test Under the sun, all sorts of stuff: looking for a neuroendocrine tumor, evaluating my thyroid, CT scan, ultrasound looking at the liver, and so on and so forth.  no one can find anything.

 A subsequent Celiac panel comes back with the same positive test.  But my outpatient GI had run the separated dgp tests around the same time and they came back negative. Now mind you I'm on a gluten-free diet at this point. I do some research on the test (thanks to someone on this site I locate the FDA summary) and a few folks who test positive on the combined DGP but negative on the separated assays are either celiacs on a gluten free diet or first degree relatives.

 So, I am like ok... I have to go see a Celiac specialist to rule this in or out  officially as I still feel like s*** and it's causing a lot of anxiety and scaring me. My brother is convinced it is the gluten,  my GI doc has put it on my medical record as Celiac but keeps referring to it as IBS even though I don't really get a lot of diarrhea (sometimes in the mornings).  So I go to Boston to see a specialist. And the hospital is absolutely fantastic. They do virtual visits, but I actually went there for my scope. I resumed gluten for 10 weeks prior to the scope. 

In April they find increased IELs, no villi blunting on the scope.  From what I've read this is considered Marsh 1.  Now this is a nonspecific finding. This can occur if you take too much aspirin or if you have SIBO  Among other things. I do not take too much aspirin and I was negative for SIBO. It can also occur with first degree relatives of someone with celiac. Yikes! Still no diagnosis!

In the meantime, I have had email conversations with gluten related researchers and have learned a lot. I also tried a new GI doc locally and he made me cry. He also jumped to like, 100 conclusions, and made me feel like I was trying to be a celiac because it is trendy. 

Let me be clear on this: I feel like s$#&. I am MUCH better at faking it now. But it is progressing. I had an old co-worker who felt like s$#& for 2 years. Kept going to the docs, "all in her head". Labs, tests...two years! Lymphoma. 

So, I would LOVE this to be celiac. But at this juncture, sitting in this jerk's exam room, I am fairly certain it is NOT. And he is still prattling on. He did throw me a bone and did some basic labs and an abdominal ultrasound. 

Finally, last week the celiac doc informs me they also see this increase in IELs with potential celiac and NCGS. So, he kind of diagnoses NCGS and tells me to go crazy strict gluten free for 3 months then follow up. I ask if we should run the separated assay again as that has not been done while on gluten since the weak positive results in 2015. He says no. 

So what do I do? I beg my primary to run it anyway because I am clearly already an annoying patient, so what the hell, what is one more annoyance. All celiac tests were NEGATIVE. My ferritin has dropped from the 70's to 20 since 2015 despite a diet high in iron.  The cutoff is 13 but I read you can get some funky symptoms before then. So I'm thinking of adding a nutrition drink with iron. But it by no means explains all of my continuing symptoms.

 I have thought long and hard about this despite knowing that I probably do not have this disease. After months of showing up in the emergency room and being terrified out of my mind I finally went out and increased my life insurance, got my young son a phone and had him learn to use it, and tried to make some changes to adjust my behavior so that I can handle the times I feel really poorly a lot better.

 I have also come to the realization, and I'm pretty sure that in between thoughts of "she must be bats$#& crazy" from my primary care, this is also what he thinks:  I have to wait. I have to keep waiting until something shows up that guides us in the right direction.  Initially this was a horrible thought because I have been unwell now over a year. I feel like all I've been doing is waiting. But I cannot keep going back to doctors who treat me like s*** and make me cry. So I am better off just waiting. I hate going to his office for every little thing because I'm not a doctor and I don't know what is connected. But I do, at least, like my primary care. He is a bit of a ball buster. 

I  have thought so much about gluten, even though I knew it may not be what my issue is, that I even began to wonder if people who test positive to tissue transglutaminase 6, the antibody that is expressed in the brain, can also have gut damage.  I wonder this because we have enteroendocrine cells that line the intestine so if the antibody can go after cells in the brain, why can't it go after any brain cells that are also in the gut? It turns out there's no research on this. Drumroll...can someone with a medical background dumb this down for me? 

 So I get to resume a gluten-free diet which I'm going to hold off on until next week so I can enjoy a few things first dammit!  Please Don't judge me on waiting the extra week, it's been a heck of a year and a half, and I've got an up coming birthday. It is important for me to note that I was already gluten-free and continued to not feel well during that time.  Initially, for a while, that was blamed on the fact that I was still going out to eat and eating processed food so I cut that out for a couple of months as well and still did not feel any better. Then it was brought to my attention that it takes time to heal.  It seems to me if you have normal VillI and just some increase in cells that it really shouldn't take a tremendous amount of time.

 So I'm not really buying that my issues are related to gluten. I am however, willing to give the diet a really fair shot. I did have one of the best researchers in the country and that is what he is telling me to do, so by golly I'm going to do it.  Sorry about The whole going behind your back and asking the primary care to run that separated assay one more time. God, I AM annoying!

 If I see a miraculous recovery by the end of the summer I will let everyone know.  But my word of advice, for anyone who is reading this, is to be cautious telling people with some positive blood work that it is solely specific for celiac disease. When that positive combined DGP assay came back positive for me I knew something was funky.  I did get a nice little mini-vacation in Boston out of it though!

 And if my boss is reading this I'm totally taking a mental health day today. Because we don't need me sitting in the office with thoughts of cancers that haven't been found running through my brain train all day. Best for me to just get it out of my system in one go and move on.

 

 

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This is really tough. 

There is still a lot of research needed in diagnosing (or dismissing) celiac disease.  It shouldn't be months/years of misery and uncertainty. A couple of years ago Dr. Marsh (THE Dr. Marsh of the Marsh biopsy rating system) criticized the US celiac community for not recognizing an increase in IELs as early celiac disease. He asked if these doctors would like to be responsible for the oseoperosis or lymphoma of the undiagnosed patients. 

I have also seen that it can take months for antibodies to rise.  There was a paper (2015) that looked at gluten challenges in diagnosed celiac patients.  These are folks with confirmed celiac  and for some it took over 3 months for blood tests to show anything.

I hope the strict gluten-free diet works for you. I hope to hear you report back in a couple of months.  I'm undergoing my gluten challenge right now. Week 2. It's just really tough. 

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People here are told to go to a gastroenterologist for an endoscopy if they show high on any one test. They are not told they have celiac. Weak high numbers can be other things, but strong high numbers are celiac most of the time. That's what my gastro told me. As nobody here is a doctor we can only give an opinion.

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19 minutes ago, tessa25 said:

People here are told to go to a gastroenterologist for an endoscopy if they show high on any one test. They are not told they have celiac. Weak high numbers can be other things, but strong high numbers are celiac most of the time. That's what my gastro told me. As nobody here is a doctor we can only give an opinion.

 That is true most people on the board do refer for Endoscopy  and are responsible in their replies to people who are initially reaching out. But I did have experiences where some folks will tell people that  certain tests are only positive with celiac disease. Which is not the case, so I'm just reminding those folks. 

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1 hour ago, Feeneyja said:

This is really tough. 

There is still a lot of research needed in diagnosing (or dismissing) celiac disease.  It shouldn't be months/years of misery and uncertainty. A couple of years ago Dr. Marsh (THE Dr. Marsh of the Marsh biopsy rating system) criticized the US celiac community for not recognizing an increase in IELs as early celiac disease. He asked if these doctors would like to be responsible for the oseoperosis or lymphoma of the undiagnosed patients. 

I have also seen that it can take months for antibodies to rise.  There was a paper (2015) that looked at gluten challenges in diagnosed celiac patients.  These are folks with confirmed celiac  and for some it took over 3 months for blood tests to show anything.

I hope the strict gluten-free diet works for you. I hope to hear you report back in a couple of months.  I'm undergoing my gluten challenge right now. Week 2. It's just really tough. 

 Oh good luck with your challenge and I hope you're able to feel better soon! 

 Yes, I am well aware of Michael Marsh and his thoughts  and they are certainly in the back of my mind.

 I was on gluten for 5 months when I had the most recent antibody testing. Admittedly my TTG was the highest I've ever seen it but it's still a 7 and the reference range goes up to 20.

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I hope you feel better too!  Sorry it's been such a long road with still no results.  It's so frustrating. People are sick, tests show nothing, but that doesn't mean nothing is going on.  

Trying the strict gluten-free diet can't hurt (other than being a pain).  I know someone locally whose 2 children have celiac.  Only slightly elevated blood test.  The damage was found lower in the small intestine when they scoped from the back end.  Don't know if that's been looked at. 

Really, wishing you the best and hoping for some positive results. 

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11 hours ago, ironictruth said:

In reading the forums I often find old posts of people undergoing testing who vanish and I always wonder what happened. I appreciate the support I have been provided. The only thing I want to remind everyone of is that no test is 100% totally sensitive and accurate all of the time. 

My story: 

I had blood drawn because my brother was diagnosed with celiac. He was serology negative, positive biopsy. I had two weak positive DGP IGA's in 2015. All other celiac tests were negative. At this point, I am totally fine. Just doing the labs per brother's suggestion. I was then gluten free for 8 months at advice of primary doc (bad advice). I became curious about whether or not I really needed to do this and went back on gluten for 6 weeks, had a scope, and everything was perfect. Doc told me because I have the DQ2 gene and a brother with the disease to go gluten free (bad advice). 

Fast forward months later and I am eating gluten free (still dining out) but getting all sorts of weird symptoms. Nausea, pain/pressure in right rib cage, head pressure (the brain squeeze). I ended up in the hospital with high anion gap and the GI did another scope and found duodenitis, no villi blunting. 

While in the hospital they did a celiac panel. This particular panel uses a  Combined DGP essay. So they combined the IGA and IGG, they don't separate it out.  It comes back moderate positive range. All other tests negative. So I am like...hmmmmm....wth???

 So over the course of the next several months I have every test Under the sun, all sorts of stuff: looking for a neuroendocrine tumor, evaluating my thyroid, CT scan, ultrasound looking at the liver, and so on and so forth.  no one can find anything.

 A subsequent Celiac panel comes back with the same positive test.  But my outpatient GI had run the separated dgp tests around the same time and they came back negative. Now mind you I'm on a gluten-free diet at this point. I do some research on the test (thanks to someone on this site I locate the FDA summary) and a few folks who test positive on the combined DGP but negative on the separated assays are either celiacs on a gluten free diet or first degree relatives.

 So, I am like ok... I have to go see a Celiac specialist to rule this in or out  officially as I still feel like s*** and it's causing a lot of anxiety and scaring me. My brother is convinced it is the gluten,  my GI doc has put it on my medical record as Celiac but keeps referring to it as IBS even though I don't really get a lot of diarrhea (sometimes in the mornings).  So I go to Boston to see a specialist. And the hospital is absolutely fantastic. They do virtual visits, but I actually went there for my scope. I resumed gluten for 10 weeks prior to the scope. 

In April they find increased IELs, no villi blunting on the scope.  From what I've read this is considered Marsh 1.  Now this is a nonspecific finding. This can occur if you take too much aspirin or if you have SIBO  Among other things. I do not take too much aspirin and I was negative for SIBO. It can also occur with first degree relatives of someone with celiac. Yikes! Still no diagnosis!

In the meantime, I have had email conversations with gluten related researchers and have learned a lot. I also tried a new GI doc locally and he made me cry. He also jumped to like, 100 conclusions, and made me feel like I was trying to be a celiac because it is trendy. 

Let me be clear on this: I feel like s$#&. I am MUCH better at faking it now. But it is progressing. I had an old co-worker who felt like s$#& for 2 years. Kept going to the docs, "all in her head". Labs, tests...two years! Lymphoma. 

So, I would LOVE this to be celiac. But at this juncture, sitting in this jerk's exam room, I am fairly certain it is NOT. And he is still prattling on. He did throw me a bone and did some basic labs and an abdominal ultrasound. 

Finally, last week the celiac doc informs me they also see this increase in IELs with potential celiac and NCGS. So, he kind of diagnoses NCGS and tells me to go crazy strict gluten free for 3 months then follow up. I ask if we should run the separated assay again as that has not been done while on gluten since the weak positive results in 2015. He says no. 

So what do I do? I beg my primary to run it anyway because I am clearly already an annoying patient, so what the hell, what is one more annoyance. All celiac tests were NEGATIVE. My ferritin has dropped from the 70's to 20 since 2015 despite a diet high in iron.  The cutoff is 13 but I read you can get some funky symptoms before then. So I'm thinking of adding a nutrition drink with iron. But it by no means explains all of my continuing symptoms.

 I have thought long and hard about this despite knowing that I probably do not have this disease. After months of showing up in the emergency room and being terrified out of my mind I finally went out and increased my life insurance, got my young son a phone and had him learn to use it, and tried to make some changes to adjust my behavior so that I can handle the times I feel really poorly a lot better.

 I have also come to the realization, and I'm pretty sure that in between thoughts of "she must be bats$#& crazy" from my primary care, this is also what he thinks:  I have to wait. I have to keep waiting until something shows up that guides us in the right direction.  Initially this was a horrible thought because I have been unwell now over a year. I feel like all I've been doing is waiting. But I cannot keep going back to doctors who treat me like s*** and make me cry. So I am better off just waiting. I hate going to his office for every little thing because I'm not a doctor and I don't know what is connected. But I do, at least, like my primary care. He is a bit of a ball buster. 

I  have thought so much about gluten, even though I knew it may not be what my issue is, that I even began to wonder if people who test positive to tissue transglutaminase 6, the antibody that is expressed in the brain, can also have gut damage.  I wonder this because we have enteroendocrine cells that line the intestine so if the antibody can go after cells in the brain, why can't it go after any brain cells that are also in the gut? It turns out there's no research on this. Drumroll...can someone with a medical background dumb this down for me? 

 So I get to resume a gluten-free diet which I'm going to hold off on until next week so I can enjoy a few things first dammit!  Please Don't judge me on waiting the extra week, it's been a heck of a year and a half, and I've got an up coming birthday. It is important for me to note that I was already gluten-free and continued to not feel well during that time.  Initially, for a while, that was blamed on the fact that I was still going out to eat and eating processed food so I cut that out for a couple of months as well and still did not feel any better. Then it was brought to my attention that it takes time to heal.  It seems to me if you have normal VillI and just some increase in cells that it really shouldn't take a tremendous amount of time.

 So I'm not really buying that my issues are related to gluten. I am however, willing to give the diet a really fair shot. I did have one of the best researchers in the country and that is what he is telling me to do, so by golly I'm going to do it.  Sorry about The whole going behind your back and asking the primary care to run that separated assay one more time. God, I AM annoying!

 If I see a miraculous recovery by the end of the summer I will let everyone know.  But my word of advice, for anyone who is reading this, is to be cautious telling people with some positive blood work that it is solely specific for celiac disease. When that positive combined DGP assay came back positive for me I knew something was funky.  I did get a nice little mini-vacation in Boston out of it though!

 And if my boss is reading this I'm totally taking a mental health day today. Because we don't need me sitting in the office with thoughts of cancers that haven't been found running through my brain train all day. Best for me to just get it out of my system in one go and move on.

 

 

ironictruth,

I think you are so early in your diagnosis that most test don't account for so early a diagnosis.

see this thread started by you and GFinDC conclusion at the end of the thread

not sure how to quote from multiple threads. Here is what GFinDC thought the study meant and I agree.

"It seems like another way to look at the positive DGP and negative biopsy is that DGP could be an early indicator of celiac disease.  Perhaps before much intestinal damage shows up."

Here is another thread that talks about what is happening to you I believe with so many test's we often can't clearly make out what is happening often.

see this link embedded in the the post as linked by squirmingitch

https://www.ncbi.nlm.nih.gov/pubmed/27352981

on the topic of  "Seronegative celiac disease: Shedding light on an obscure clinical entity." and might be what you are experiencing from your test results.

But I want to say why while you so want it to be "Celiac" and not the "C" word I think Pellagra should be considered as a differential diagnosis.

I say this and repeat it to those who will listen.  Niacinamide helped me.

This article on celiac.com explains why this might be so https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

and if taking a b-complex 2 to 3 a day (and Niacinamide) for a couple months greatly alleviates many of your GI problems then you also  have had pellagra co-morbid and the doctor's don't recognize it in a clinical setting today .  . .  mainly because they don't know to look for it any more today.

I wrote about how to take niacinamide in my blog post about this topic so I wouldn't have to retype it several times.

I want to quote from the discussions section the heart of most good research from the American Journal of Clinical Nutrition research article linked in my posterboy blog thread about how to take niacinamide and why you would want too Faq.

poster here again for those who want to do the deep research from their discussion section.

http://ajcn.nutrition.org/content/85/1/218.full

"Random spot urine sampling, together with the measurement of 1-MN and 2-PYR concentrations, has been suggested as an alternative because it avoids these issues and would provide a guide to status (22). However, the ratio of these metabolites has been shown to vary according to the time after the last meal because they are sequential intermediates on the same catabolic pathway (21). This makes the ratio an intrinsically unstable variable for use in population surveys; in the present study we chose to use cutoffs previously established for the excretion of individual metabolites expressed relative to creatinine. The subjects whose excretion fell below the established cutoffs for either metabolite were considered to be deficient."

A little technical but essentially we soo need b-vitamins that even if you have a test for low vitamin b-3 the amount of the b-3 in your meal (f you have not fasted before the test) can cause us to test in a low normal range thus making taking of the b-vitamin a self test of cause and effect.

Did you get better after taking Niacinamide then if taking Niacinamide helped your GI problems you were low in Niacinamide.

This is typically a 24 hour test and most people don't fast 24 hours before going to the doctor and will often fail this test since our body has absorbed enough from our food to help us pass the thresh hold set at the minimum level.

Here is why it is good to take a b-complex with Niacin/niacinamide because it interacts with other nutrients.

https://www.ncbi.nlm.nih.gov/pubmed/3804611/

including b-6 which is one of the metabolites measured to determine a pellagra diagnosis.

see this mdguidelines link that summarizes this well.

http://www.mdguidelines.com/pellagra

where they say  quoting there treatment section

"Treatment consists of high oral doses of niacinamide, a form of niacin. Usually, supplements of other B-vitamins are also given because many individuals with pellagra also have low levels of B1, B2, B6, and pantothenic acid." and possibly Zinc if the other research is correct.

***** this is not medical advice just my research on the topic and experience with taking Niacinamide to treat many of my GI problems.

Prousky wrote about this 15+ years ago and still people are not aware of this fact that Niacinamide treats digestive problems.

http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm

and if they are are aware of it are they are slow to accept that a vitamin could help with their GI problems.

the gluten free works site also has a great article on this topic.

http://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/

while it is recognized that celiac's have many of these deficiency it is not well accepted/understood today low Niacinamide alone can treat many GI problems though the research is 15+ years old .  . . still people suffer.

I don't want you to have pellagra or celiac but I want you to be aware there is a another valid differential diagnosis that can make sense for many people seeking to be diagnosed as a celaic disease patient.

because people with pellagra often get better very quickly it is worth a try or least some of your time to research it some more.

***again this not medical advice.  Please check with your doctor about this possibility but don't be surprised if he doesn't know much about pellagra and probably less than he does about celiac disease.

Dr. Heaney talks about why this is today on his blog about the 4 D's of Pellagra and why doctor's don't recognize it today in a clinical setting.

http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/

good luck on your continued journey.

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,

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Well first things first, I always read your posts with interest, you have gone the extra mile for answers, put the intellectual work in and crucially kept a rational and grounded perspective throughout and if anyone deserves them you do.  Sadly of course I don't have any, :P so I'll simply send my sincere best wishes across the Atlantic.  I really do hope you find your answer. 

On this:

8 hours ago, ironictruth said:

Initially, for a while, that was blamed on the fact that I was still going out to eat and eating processed food so I cut that out for a couple of months as well and still did not feel any better. Then it was brought to my attention that it takes time to heal.  It seems to me if you have normal VillI and just some increase in cells that it really shouldn't take a tremendous amount of time.

I tested negative for celiac and my endoscopy didn't show villi blunting. I do however definitely react to gluten in all sorts of ways. So I'm in the nebulous NCGS group, a condition that most of the world seems uncertain even exists or if so questions its relation to gluten.  I wanted certainty and answers and I never really got them. I've come to accept that it's an imperfect world and this is still in medical terms an imperfectly understood area. I've had to park the question of whether I had celiac but it wasn't picked up (there were some flaws in the diagnostic process) or early onset celiac or NCGS or its really fodmaps and I'm working on a false correlation or it's NCIS, no, CSI New York, etc etc. In the end I was exhausted, sick of feeling ill and had proved to my own satisfaction that gluten was a problem and I decided to leave it at that. It's not ideal by any means, but, hey, whaddya gonna do? 

There are things I know about my own condition that I can't necessarily demonstrate or have validated by a test. It is, by definition, anecdotal at best, but I'll offer it in any case. One of them would be the recovery on the gluten free diet. This was very much a matter of time. I did have some very quick responses, within a few days for instance for an improvement in brain fog, anxiety etc. Some of the weirder neuro symptoms seemed to take much longer and although the endoscopy was negative for villi damage I can't help thinking that malabsorbtion may be an explanation for the time some of these longer term issues took to resolve. 

Weirdly some of those neuro symptoms, say the muscle twinges, that took a long time to resolve now seem to trigger occasionally I think in response to minute cross contamination issues. I have no idea what this means, maybe they require the least amount of gluten present to present so they were amongst the last to stop? I know just a few days ago I was noticing an errant muscle repeatedly twitching and I started thinking about the bbq I'd just risked using...

None of which of course proves anything or gets you further down the road. I do think however that this:

20 hours ago, ironictruth said:

So I get to resume a gluten-free diet which I'm going to hold off on until next week so I can enjoy a few things first dammit!

is a good idea and I'd encourage you to push that limit back from the end of summer to a date at least 6 months and perhaps longer away (I'm thinking 12). The gluten free diet is a pain in the arse but it's healthy (or it is if you make it so) and aside from a slight increase in expense it's increasingly straightforward to follow. Go gluten free, apply just the same rigour in pursuing the diet that you have in looking for answers. Do the food journal. Do the whole foods for 3 months, cross contamination procedure with pans, check toothpaste etc.  In short, proceed as if you'd had a positive celiac diagnosis and try to eliminate all doubts. For X many months, live as if gluten free isn't a choice, but a necessity.  It makes it easier believe it or not. Give the diet sufficient time and you will be running perhaps your last test by yourself, for me that was the most significant test of all. 

Oh and on this:

20 hours ago, ironictruth said:

But I cannot keep going back to doctors who treat me like s*** and make me cry.

I learnt, at great personal cost in terms of the sheer misery I went through that my view of health professionals was juvenile and unhelpful. The unquestioning belief that as children we invest in doctors, nurses etc can translate into an over investment of trust to a level which would not be the case in any other comparable scenario. You go to them at your weakest moments, in search of validation, comfort, solutions etc. and if you have a bad experience the first impulse is to blame yourself or question your own experience.

Well I'm way past that now. :)

Just like any other walk of life there are good, bad and lot's of indifferent people working within. I've had some great experiences but I've also had some awful ones and indeed just a few days ago I had one so bad that for the first time in my life, I lodged a complaint. Please understand as a British person this is very unusual indeed :D It was a horrendous meeting and I was treated in such an appalling way that if I related it here you may not believe me. A couple of years ago it would've destroyed me. Now I just shrugged it off, then realised that if I allowed that behaviour to pass unquestioned I'd be doing a disservice to the next person who had to suffer that kind of treatment. You've shown on here your an intelligent person with a fully justified and admirable engagement in looking for answers. If your doctors aren't picking up on that the fault lies with them.

tldr **** them. :)

Best wishes from the sunny UK B)

Matt

 

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Matt, 

Your post has literally changed my attitude over my morning coffee today In a matter of minutes.

 You have done a wonderful job summing up the experience of not only myself, and you as well, but my guess is probably a lot of people who come to this board. 

 I know from having some email conversations with researchers that even those in the gluten Community do not see eye-to-eye on all of this. So we certainly do have a long way to go.

 As for the three months you're absolutely right, as I had already tried a strict diet for 2 or 3 months and still had a lot of symptoms. I think the doctor just wants to meet after 3 months to see if there's any Improvement, the test. But I'll give it a good 6 to 12 as you suggest.  There is that lingering fear that nothing will get better and I'll continue to go undiagnosed with something sinister.  it is hard not to think that way in my case. however, again, your post is giving me some hope. And even if that hope is not realistic at the very least it's a distraction for a little while which I need.  And hey, it may just be the answer!

 I am often on the fence about whether or not I should be b%$@#ing about my doctors.  in reality, two of the things in life I would never want to be would be a doctor or a landlord.  people really do look to doctors as if they are God.  a friend of mine is a physician and told me that it's quite frustrating for doctors when they can't figure out what's wrong with the patient and they get burnt out.  so I have a lot of respect for the Physicians who keep trying to find what's wrong and do so while being polite and courteous to the patient even though they may inside be feeling frustrated. I have absolutely no respect for the ones who  fail to notice that there are recalls out on their models of the God complex.

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I am going to have to remember this: "Doctors who fail to notice there are recalls out on their God complex". Brilliant!

I'm wondering what symptoms failed to resolve?  All of them?  Some of them?  Neurological ones?  I'm sure you have read Dr. Hadjivassilou's work. I listened to an interview with him and he stated that neurological ones can take a year, and even small amounts of CC set you back. So that is something to consider. 

jmg's advice is so sound. Thank you!

NCGS - grrr. That one really annoys me. My daughter was first brushed off as Fodmap issues because she also had SIBO.  No one believed me that the SIBO and gluten reactions were not the same.   So she was told it's probably NCGS which is likely really a Fodmap issue.  Resolve the SIBO and she can go back to gluten.

No.  Now that she is SIBO free, the neurological symptoms REALLY show through. But she also has terrible stomach pain when accidentally Glutened. Because of the neurological symptoms, now the GI says hmm, she could have celiac but just wasn't far enough along to test for it. Does she want a 12 gluten challenge?  What part of she loses the use of the right side of her body didn't you understand?  No gluten additional challenge for her. 

But I have now noticed my reaction and my history of headaches and anemia and unexplained weight loss and hair thinning and stress fractures. So I'm going through the gluten challenge. It's for me, it's for my daughter, it's for  my niece and nephew who all have early symptoms that I recognize but my sister won't take seriously.  And I'm running it as a bit of an experiment.  I have eaten a low Fodmap diet for a year because of my daughter's SIBO. I purposely added high Fodmap foods first to see what happened (no gluten).  All good. I added bread, noted the reaction. I added JUST vital wheat gluten. Exact same reaction as bread.  In fact right now I'm pretty much just doing the gluten that is equivalent to a couple pieces of bread, eating bread or pasta when I occasionally go out. I am NOT going to have them tell me it's not gluten when it clearly is.  It seems that certain celiac research centers have all of their eggs in the NCGS/Fodmap basket at the peril of their patients.  

Again, ironic truth, good luck with the Gluten-Free, give yourself time and be patient.  I can tell you that strict gluten-free was more than I initially thought. It took some time before we eliminated all of the CC. I was personally shock at how little it took to cause problems. I would definitely like to know how you are doing. So many people move off of the boards and I wonder how they are doing. 

 

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ÖThe potential celiac or  NCGS  diagnosis is given to me by the Celiac researchEr.  I do not think it's official until after we meet again.

 actually I have not heard of that doctors work. I will look it up and see if I can listen to an interview. Thanks for sharing.

 some of the symptoms that I continue to have Had on a strict gluten-free diet or similar to what I have now  and some of them disappeared. Of course During that time I was thrown on Xanax and some Protonix even though I don't actually have acid reflux. So there may have been some symptoms that were caused by those medications but I've been off Of Them for months now.

 I guess headed pressure would be one of the more prominent symptoms  that I still had on a gluten-free diet although it's much much worse recently well I'm gluten.  it was almost like I can feel a strange sensation in my gut and the head at the same time but it's nothing like what you would think it wasn't cramping it wasn't... I don't know how to describe it. it does not feel anything like sinuses it's a really strange feeling like my brain Is inflamed Or being squeezed.  When I first started getting it it scared the living crap out of me because I thought I was going to end up passing out. I would be afraid to drive alone with my young son. Now admittedly I was diagnosed with inflammation of the small intestine in late August and was gluten free throughout the fall but started eating it again in late December. So I may not have given myself a tremendous amount of time to heal from the August duodenitis. 

 Currently I have pain in the right rib cage area,  I also get a tremendous amount of pressure in that area mostly when I'm sitting. Kind of like when us pregnant women had a baby's foot stuck up in that area.  I get nausea on and off, some shortness of breath, dizzy,  when my brain gets that  pressure my eyes often feel it as well, and I get some transient numbness and tingling in my hands and oddly in my face.  last summer I had Random episodes of blood pressure drops as well. I would start to really not feel well and noticed that eating actually helped those episodes. I was exercising a lot At the time but ate constantly  and was maintaining my weight. One doctor theorized it might be my blood sugar dropping so I bought a monitor but I never caught that. The only thing that I did catch was when I bought the blood pressure monitor and started taking my blood pressure when these episodes were happening. 

 for the most part I had pretty good health up until about a year-and-a-half ago and a very strange six months or so about 13 years ago where a lot of neurological stuff happened as well. I had vertigo, visual disturbances, eye floaters, muscles twitching, ants crawling sensation on my scull, some really strange stuff. It lasted about 6 months and over time it just went away.  except for the eye floaters, they stuck around. I'm not particularly concerned about them it's just that they were not there one day and I had some visual disturbances and Bam there they were and they never went away. I have a half-sister with MS but we ruled it out for me at that time and we also ruled it out last summer as well. 

 I did the whole 12-week thing that they're suggesting for your daughter. We figured the six weeks wasn't long enough.  For the most part other than a few weird things I honestly didn't get strange symptoms until the end of the six weeks so 12 weeks made sense. I think I actually ended up doing 10 weeks before the biopsy This time. Nothing but the increase in IELs.  I know they only biopsy the duodenum and I wonder sometimes if it's not just lower down. But with the negative blood work except for that one random test I don't know if it's really worth pursuing any more testing at this point. I'm so tired.  I know my brother is seronegative but that's pretty rare although I have no idea whether or not they've ever done a study on if that happens to be familial.  I also would really like to know if people who test positive for TTG 6 have any gut damaged. Because if that's the case perhaps there is no seronegative celiac disease

 Have you read Dr. Fasano's work?  he writes back both Celiac and ncgs.

 How long are you doing your challenge for again?  I know you may be anxious for answers as well but my suggestion just from personal experience would be to go as long as you can. 

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I can tell you that the head pressure you are speaking about is one of the symptoms I am experiencing now.  And fogginess and dizziness. 

I'm going to go as long as I can with my challenge. Im hoping the new GI I'm going to see will work with me. I would like him to do blood work every month to see if levels are changing.  There were so many problems with my daughter's challenge and testing. U of C at the time only recommended a 6 week challenge. And only tTG IgA and total IgA were run. Not a full panel. Well after the biopsy and when insurance wouldn't give us another referral we were told that there was a more extensive panel. By then she was gluten free and we were not going back.  

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On 5/25/2017 at 2:39 PM, ironictruth said:

 That is true most people on the board do refer for Endoscopy  and are responsible in their replies to people who are initially reaching out. But I did have experiences where some folks will tell people that  certain tests are only positive with celiac disease. Which is not the case, so I'm just reminding those folks. 

I wonder if this post is referring to me?  I tested high positive with blood tests and was denied an endoscopy as it was seen as unnecessary.  The Dr. said they already knew it was celiac based on the extremely high blood test.  I immediately went gluten free and all further testing including endoscopy which I had to beg and barter and pull strings to get, have been negative.  Might it be Pellagre instead?  My fatigue is much better gluten free but carbohydrates seem to cause almost instant brain fog.  I have at times doubted my diagnosis because it came from a misinformed Dr.

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2 hours ago, Estes said:

I wonder if this post is referring to me?  I tested high positive with blood tests and was denied an endoscopy as it was seen as unnecessary.  The Dr. said they already knew it was celiac based on the extremely high blood test.  I immediately went gluten free and all further testing including endoscopy which I had to beg and barter and pull strings to get, have been negative.  Might it be Pellagre instead?  My fatigue is much better gluten free but carbohydrates seem to cause almost instant brain fog.  I have at times doubted my diagnosis because it came from a misinformed Dr.

Certainly the post was not aimed at you directly. Are you still feeling unwell? Shame on your doctor for denying you a diagnostic test. How long have you been gluten free?  Which tests were positive? Have they been re-tested since you were gluten free? Do you carry the gene? 

Finally, roughly where do you live? 

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On 5/26/2017 at 9:20 AM, Feeneyja said:

I can tell you that the head pressure you are speaking about is one of the symptoms I am experiencing now.  And fogginess and dizziness. 

I'm going to go as long as I can with my challenge. Im hoping the new GI I'm going to see will work with me. I would like him to do blood work every month to see if levels are changing.  There were so many problems with my daughter's challenge and testing. U of C at the time only recommended a 6 week challenge. And only tTG IgA and total IgA were run. Not a full panel. Well after the biopsy and when insurance wouldn't give us another referral we were told that there was a more extensive panel. By then she was gluten free and we were not going back.  

I know you will keep me posted! Let me know if the head stuff gets worse as you go along. 

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10 hours ago, ironictruth said:

Certainly the post was not aimed at you directly. Are you still feeling unwell? Shame on your doctor for denying you a diagnostic test. How long have you been gluten free?  Which tests were positive? Have they been re-tested since you were gluten free? Do you carry the gene? 

Finally, roughly where do you live? 

I have been gluten free for 15 months.  I was ttg amd Iga positive.  My ttg was 100 which maxed out the reading.  Range was  maybe 0-7.  I have been retested and all are within the 0-7 range.  I do not know if I carry the gene, never been tested. No relatives with celiac.  I live in Iowa, USA.

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12 hours ago, Estes said:

I wonder if this post is referring to me?  I tested high positive with blood tests and was denied an endoscopy as it was seen as unnecessary.  The Dr. said they already knew it was celiac based on the extremely high blood test.  I immediately went gluten free and all further testing including endoscopy which I had to beg and barter and pull strings to get, have been negative.  Might it be Pellagre instead?  My fatigue is much better gluten free but carbohydrates seem to cause almost instant brain fog.  I have at times doubted my diagnosis because it came from a misinformed Dr.

Estes,

I want to respond to your question might it be Pellagra instead?

It might be but it will be hard to prove by testing.

See my response to this question from an earlier thread.

The in International Journal of Celiac disease noticed this connection in 58% of Celiac's.

Here is the link http://pubs.sciepub.com/ijcd/3/1/6/

quoting  (My words Pellagra is)

"Considered now as a vitamin deficiency state, pellagra has been linked to a chronic lack of niacin (vitamin B3 or nicotinic acid), an important constituent of coenzyme I and coenzyme II. Its clinical map is believed to include the classic 3 Ds: Dermatitis, Dementia and Diarrhea. The order of appearance and severity of these three sub-syndromes varies and some may not show at all."  and their note  that "Unfortunately, the patient was not diagnosed biochemically as pellagra and died before gluten free diet was initiated."

and also notice this research as first pointed out by Knitty Kitty

https://www.ncbi.nlm.nih.gov/pubmed/2084620

People who had pellagra and esophagitis showed improvemnt in their condition in only a week of supplementation.

But they stopped too soon.

The ajcn link quoted in an earlier response noted clinical remission after 3 weeks of 3/day supplementation with Niacinamide plus a B-complex and a high quality niacin containing food regimen for 3 more months to ensure complete remission.

Here is the link again.

http://ajcn.nutrition.org/content/85/1/218.full

the problem most people have today most people wont take a vitamin that long (3 months) or that frequent (2 to 3 daily) to completely recover.

but we know even if you take a  b-complex with as little as 100mg Niacinamide 3/day for a month many of our GI problems will improve because it is the clinical response to the vitamin that confirms the diagnosis.

I think of a 3 month cycle as more cautious to avoid someone relapsing back into sub-clinical pellagra but if that is too aggressive in your mind then take it (Niacinamide) for only a month 2 to 3/daily to see if it doesn't help is worth a try  I think.

My experience with B-vitamins tells me 3 months is ideal because that repletes our storage sites in the liver.  You should probably take this/is (Niacinamide) with a B-complex so as too keep your other B vitamins in balance as well.

****** this is not medical advice but I hope it helps you the way it did me.

good luck on your continued journey.

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,

 

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On 5/26/2017 at 7:55 AM, ironictruth said:

I also would really like to know if people who test positive for TTG 6 have any gut damaged. Because if that's the case perhaps there is no seronegative celiac disease

Ironictruth,

I think that is a very insightful thought.

since different antibodies present for different body systems all the ways gluten affects the body is still not well understood.

Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage.

http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html

entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today.

I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet.

https://www.hindawi.com/journals/cggr/2012/302875/

notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient.

quoting

"The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants."

which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years.

***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today.

good luck on your continued journey.

posterboy by the grace of God,

 

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I'm going to play Captain NCGS to Posterboy's Professor Pellagra (No doubt the Marvel and DC Cinematic Universes will soon be bidding for our services) and say that regardless of the blood test results, this:

On 5/26/2017 at 1:55 PM, ironictruth said:

some of the symptoms that I continue to have Had on a strict gluten-free diet or similar to what I have now  and some of them disappeared.

is exhibit one. You have a reaction to the gluten free diet. That doesn't necessarily eliminate fodmaps or issues with other components of wheat, but it's at least suggestive and the main reason I think you need to get back on it and give it a longer go. In fact, as I hinted at in the previous post, I'd be doing my 'goodbye gluten' top 10 croissant and bagel bucket list because I don't think you should go back to it simply based on exhibit one. It's messing with you in a way that it shouldn't.

On 5/26/2017 at 1:55 PM, ironictruth said:

 Currently I have pain in the right rib cage area,  I also get a tremendous amount of pressure in that area mostly when I'm sitting. Kind of like when us pregnant women had a baby's foot stuck up in that area.

I had sciatic back pain for 20 years which I attributed to a disk injury. It was left sided and when bad travelled down my left leg following the sciatic nerve. I had all the scans, treatments, exercises etc. Nothing really worked and it was at times intensely debilitating.  Drum roll... Gluten free diet cured it. My new theory is that gluten related inflammation was localised in that area and it caused the pressure on the nerve. Now why there and not elsewhere? No idea, but it could be inflammation causing your pain?

On 5/26/2017 at 1:55 PM, ironictruth said:

I get nausea on and off, some shortness of breath, dizzy,  when my brain gets that  pressure my eyes often feel it as well, and I get some transient numbness and tingling in my hands and oddly in my face.  last summer I had Random episodes of blood pressure drops as well. I would start to really not feel well and noticed that eating actually helped those episodes. I was exercising a lot At the time but ate constantly  and was maintaining my weight. One doctor theorized it might be my blood sugar dropping so I bought a monitor but I never caught t

I went for several diabetes tests because I would suddenly become very weak, hungry and I would feel unwell. Weak, hot, light headed, on the verge of passing out. The tests were normal but I knew that I seemingly had a blood sugar issue. Another win for the gluten-free diet.  It sorted the tremors in my hand (begone thoughts of early onset parkinsons or ms) and the nerve twitching under my eye and etc etc. well you get the point. I've said above I sometimes wonder if I'm undiagnosed celiac but there are certain aspects of NCGS which seem to fit me and maybe you too. My digestion stomach etc is much better now but I wouldn't have said before all this that it was particularly bad. I read this http://www.bmj.com/content/345/bmj.e7982 and I have a similar experience that neuro symptoms were more apparent than digestive in the 'classic celiac' model. (more of that sort of thing here though I already sent you the Umberto Volta I think.

On 5/26/2017 at 1:55 PM, ironictruth said:

I know they only biopsy the duodenum and I wonder sometimes if it's not just lower down. But with the negative blood work except for that one random test I don't know if it's really worth pursuing any more testing at this point. I'm so tired.  I know my brother is seronegative but that's pretty rare although I have no idea whether or not they've ever done a study on if that happens to be familial.

I would be fascinated if you, your brother and myself were to do the gluten challenge and then take this test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 what the result would be. But you know what, unless the scientists put out a call for more volunteers I won't be doing it. In the search for answers, validation, certainty, it's easy to forget the real goal, feeling better. After several years on the gluten-free diet I feel better. I'm no longer thinking that the next bout of chest pain will be my last minutes on earth. I no longer worry about going blind because half my vision has gone grey, I'm not trembling, I don't have cardiac arrythmia, I don't have rheumatic pain, I don't have crippling back ache like I'm 40 years older, I don't get  faint, dizzy and heart pounding when I stand up,  I don't have brain fog, anxiety, depression (well sometimes!), painful stomach cramps, weird white tongue, rashes on my torso, horrible greasy skin on face, horrible dry peeling scalp, sores on my scalp and neck, white spots on my fingernails, I'm not sweating so much I have to douse myself in antiperspirant, I don't have all this and more and I don't have a letter from a doctor saying I have celiac and I don't give a **** about it. I don't have gluten and as the Godfather of soul would say... 

I feel good 

:)

Feel good IT. You've done as much as anyone could to find an answer. Maybe there's one around the corner or maybe there'll be one in 5 or 10 years when the likes of Marios Hadjivassiliou, Umberto Volta or Alessio Fassano have completed their research. Or maybe not or never. It's in the 'nice to have' than the essential's for me now. Do the diet, note your symptoms, stay connected with your doctor so that if there is anything that sticks around suggestive of other things you're on top of it, but feel good and focus on that and enjoying life. 

All the best!

 

 

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8 hours ago, Estes said:

I have been gluten free for 15 months.  I was ttg amd Iga positive.  My ttg was 100 which maxed out the reading.  Range was  maybe 0-7.  I have been retested and all are within the 0-7 range.  I do not know if I carry the gene, never been tested. No relatives with celiac.  I live in Iowa, USA.

Certainly seems likely if those levels dropped due to gluten removal. I am just curious, when you had the scope eventually, were you eating it? 

Are you feeling any better? 

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1 hour ago, Jmg said:

I'm going to play Captain NCGS to Posterboy's Professor Pellagra (No doubt the Marvel and DC Cinematic Universes will soon be bidding for our services) and say that regardless of the blood test results, this:

is exhibit one. You have a reaction to the gluten free diet. That doesn't necessarily eliminate fodmaps or issues with other components of wheat, but it's at least suggestive and the main reason I think you need to get back on it and give it a longer go. In fact, as I hinted at in the previous post, I'd be doing my 'goodbye gluten' top 10 croissant and bagel bucket list because I don't think you should go back to it simply based on exhibit one. It's messing with you in a way that it shouldn't.

I had sciatic back pain for 20 years which I attributed to a disk injury. It was left sided and when bad travelled down my left leg following the sciatic nerve. I had all the scans, treatments, exercises etc. Nothing really worked and it was at times intensely debilitating.  Drum roll... Gluten free diet cured it. My new theory is that gluten related inflammation was localised in that area and it caused the pressure on the nerve. Now why there and not elsewhere? No idea, but it could be inflammation causing your pain?

I went for several diabetes tests because I would suddenly become very weak, hungry and I would feel unwell. Weak, hot, light headed, on the verge of passing out. The tests were normal but I knew that I seemingly had a blood sugar issue. Another win for the gluten-free diet.  It sorted the tremors in my hand (begone thoughts of early onset parkinsons or ms) and the nerve twitching under my eye and etc etc. well you get the point. I've said above I sometimes wonder if I'm undiagnosed celiac but there are certain aspects of NCGS which seem to fit me and maybe you too. My digestion stomach etc is much better now but I wouldn't have said before all this that it was particularly bad. I read this http://www.bmj.com/content/345/bmj.e7982 and I have a similar experience that neuro symptoms were more apparent than digestive in the 'classic celiac' model. (more of that sort of thing here though I already sent you the Umberto Volta I think.

I would be fascinated if you, your brother and myself were to do the gluten challenge and then take this test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 what the result would be. But you know what, unless the scientists put out a call for more volunteers I won't be doing it. In the search for answers, validation, certainty, it's easy to forget the real goal, feeling better. After several years on the gluten-free diet I feel better. I'm no longer thinking that the next bout of chest pain will be my last minutes on earth. I no longer worry about going blind because half my vision has gone grey, I'm not trembling, I don't have cardiac arrythmia, I don't have rheumatic pain, I don't have crippling back ache like I'm 40 years older, I don't get  faint, dizzy and heart pounding when I stand up,  I don't have brain fog, anxiety, depression (well sometimes!), painful stomach cramps, weird white tongue, rashes on my torso, horrible greasy skin on face, horrible dry peeling scalp, sores on my scalp and neck, white spots on my fingernails, I'm not sweating so much I have to douse myself in antiperspirant, I don't have all this and more and I don't have a letter from a doctor saying I have celiac and I don't give a **** about it. I don't have gluten and as the Godfather of soul would say... 

I feel good 

:)

Feel good IT. You've done as much as anyone could to find an answer. Maybe there's one around the corner or maybe there'll be one in 5 or 10 years when the likes of Marios Hadjivassiliou, Umberto Volta or Alessio Fassano have completed their research. Or maybe not or never. It's in the 'nice to have' than the essential's for me now. Do the diet, note your symptoms, stay connected with your doctor so that if there is anything that sticks around suggestive of other things you're on top of it, but feel good and focus on that and enjoying life. 

All the best!

 

 

Thank you JMG! 

 

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59 minutes ago, ironictruth said:

Thank you JMG! 

 

It needed paragraphs :rolleyes:

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1 hour ago, ironictruth said:

Certainly seems likely if those levels dropped due to gluten removal. I am just curious, when you had the scope eventually, were you eating it? 

Are you feeling any better? 

No, I was gluten free both times I had a scope.  They found eosinaphalic esophagitis and most recently ulcers.  The ulcers were the cause of the nausea apparently.

i feel pretty good most of the time if I take all my vitamins, avoid sugar and carbs and lean toward the AIP diet.  I then have a corn tortilla or popcorn with my dinner and it's enough carbs for good sleep.

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