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pgrovetom

Gluten Or Food Allergy Medical Help In Sonoma County

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I'm looking for competent medical advice for what I believe is Gluten sensitivity related problems in the Sonoma County area or even greater Bay Area if needed. I've had to sort out a number of chronic medical problems over the last 10 or so years. Starting in my late 40's along with enormous stress, I began encountering a number of medical problems that were very confusing to sort out. It started with a chronic fatigue that seemed to get worse and worse. I first took the psychiatrist route and had zero luck with SSRIs and medications for depression. I then had fairly extensive first level blood tests and discovered extremely low, <100, levels of testosterone. I thought the problem was found but began testosterone shots about 8 years ago but it had little effect. Because one of the symptoms was ever worsening sleep and snoring, I tried CPAP and eventually surgery for sleep apnea after a sleep study at Stanford plus nightly O2 saturation testing. That helped my sleep and my apnea related events dropped well into the normal range having been found to be moderate to severe, night to night. Again I hoped it was over. It wasn't. In the meantime, I was diagnosed with Asthma and an NSAID sensitivity appeared which caused angio-edema or uticartia which appeared as swelling around my lips and mouth after taking NSAIDs in higher doses. These immune related problems seemed unrelated at the time.

I saw a couple of different doctors outside Kaiser because I found Kaiser terrible at doing a basic differential diagnosis and sticking to it after being passed off to a specialist. I described my many GI and neurological symptoms and a food challenge test was suggested by one doctor. He thought I might have a food sensitivity and felt eliminating food groups one at a time was the best approach. When I got to eliminating wheat/gluten for a week, I noticed a distinct improvement in my symptoms. I then took a Labcorp Celiac comprehensive panel which indicated I had a high 10.4 U/l on the Deamidated Gliadin Abs, IgA but everything else was negative. The high IgA seemed to support my challenge/elimination results but it didn't appear to have gone to Celiac. I felt better for a while but began having some of the odd symptoms coming back especially upon waking. Kaiser did a Celiac biopsy during my Colonoscopy and did 2 Endoscopies, all of which came back negative for Celiac or showing any problems with my intestinal lining from both ends.

So now it appears I probably have a Gluten sensitivity but not one that's evolved into Celiac. The symptoms have gotten worse and worse even though I read every label for everything I eat to be sure it contains no wheat or Gluten. I've tried the food elimination a couple of times with inconclusive results. I've ruled out medications because I've only taken a few throughout the last few years. The symptoms have evolved into feeling extremely ill upon waking with strong psychiatric aspects. These symptoms have ranged from severe to mild and there have been a couple of days and multiple days where I almost feel normal. This day to day variability strongly suggests its something I'm eating or being exposed to that varies daily. I've had about 50 different blood tests looking for everything from virus's and other common bugs or any organ problem. Everything comes back negative. Its reached to point where I feel the Kaiser doctors seem to be going through the motions from my GP,the GI, neurology and endocrinologist.

I really need to find a doctor or clinic that will take the concept of a differential diagnosis seriously until the underlying problem is found. Many things have been ruled out by the many tests. I want to find someone who can really help me rule out the food sensitivity since everything I've experienced points back and resembles my original Gluten sensitivity. Am I getting small amounts of Gluten due to label issues or cross contamination and its till Gluten problems, is it another food group or is it something(s) else. I'm near my wits end and need a doctor who will take diagnosis seriously. The Kaiser and traditional doctors are extremely conservative while the alternative doctors I've seen are marginally science based.

Any ideas, pointers, advice, doctors, clinic or testing ideas greatly appreciated. I can afford anything and would happily give a doctor who could find my problem and solve it a serious reward if it was possible. The problem is I don't know how to find someone that's not stuck in Kaiser like conservatism/cost control or wild and crazy non-science based alternative. I have seen 2 alternative docs and wasn't impressed.

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Welome to the board, pgrovetom.

The DGP (deaminated gliadin peptide) is one of the newest and most sensitive tests for celiac. What makes everyone think that you do not have a problem with gluten - the negative biopsy??? or that the other celiac tests were negative?? It is not necessary to test positive on every blood test, and it is entirely possible that you have not yet done enough damage to your small intestine for the doctor to be able to find it and take the biopsy from the right spot, or maybe he did not take enough samples. I have read research here on celiac.com (sorry, don't have the reference immediately to hand) that when three or fewer samples are taken they find the damage only 39% of the time, while if 8-11 samples are taken the accuracy rises dramatically. Also, how long had you been eliminating gluten from your diet before your blood tests? because if it were longer than a week that would affect your results.

So let's assume gluten is the #1 problem. There are many places that gluten hides: in personal care products, in scrips or OTC medications, in cooking utensils that have previously been used for gluten cooking. If you are living in a house with other gluten eaters cross-contamination from gluten foods and gluten-covered surfaces is highly probably; if you kiss a significant other and they have not brushed their teeth :o - bammo, cc!!

Assuming you have eliminated all these sources of cross-contamination, your next thing to consider is other intolerances that often ride with gluten. The first of these is dairy, either lactose alone or full-blown dairy including casein. If you do have damage that has not been detected in your small intestine that will impair your ability to digest lactose at the very least. Many celiacs are also intolerant to soy, and often end up eating more soy than they are used to (puts hand up) because it seems to be substituted for gluten at every opportunity. It is occurring in more and more foods because it is so plentiful and cheap. So rather than doing a full elimination diet you might try eliminating those two food products and see how it turns out. If you are lactose intolerant only, then you may still be able to eat hard cheeses, even yogurt, but will not be able to handle milk, cream, ice cream.

The third thing to consider is that the neurological symptoms of gluten intolerance take longer to resolve than the gastrointestinal, and you have to be patient with these.

I would certainly consider that you are on the right track and you just need some refinements, tightening up on cross-contamination (eating out is a big one), and patience. :)

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Welome to the board, pgrovetom.

The DGP (deaminated gliadin peptide) is one of the newest and most sensitive tests for celiac. What makes everyone think that you do not have a problem with gluten - the negative biopsy??? or that the other celiac tests were negative?? It is not necessary to test positive on every blood test, and it is entirely possible that you have not yet done enough damage to your small intestine for the doctor to be able to find it and take the biopsy from the right spot, or maybe he did not take enough samples. I have read research here on celiac.com (sorry, don't have the reference immediately to hand) that when three or fewer samples are taken they find the damage only 39% of the time, while if 8-11 samples are taken the accuracy rises dramatically. Also, how long had you been eliminating gluten from your diet before your blood tests? because if it were longer than a week that would affect your results.

So let's assume gluten is the #1 problem. There are many places that gluten hides: in personal care products, in scrips or OTC medications, in cooking utensils that have previously been used for gluten cooking. If you are living in a house with other gluten eaters cross-contamination from gluten foods and gluten-covered surfaces is highly probably; if you kiss a significant other and they have not brushed their teeth :o - bammo, cc!!

Assuming you have eliminated all these sources of cross-contamination, your next thing to consider is other intolerances that often ride with gluten. The first of these is dairy, either lactose alone or full-blown dairy including casein. If you do have damage that has not been detected in your small intestine that will impair your ability to digest lactose at the very least. Many celiacs are also intolerant to soy, and often end up eating more soy than they are used to (puts hand up) because it seems to be substituted for gluten at every opportunity. It is occurring in more and more foods because it is so plentiful and cheap. So rather than doing a full elimination diet you might try eliminating those two food products and see how it turns out. If you are lactose intolerant only, then you may still be able to eat hard cheeses, even yogurt, but will not be able to handle milk, cream, ice cream.

The third thing to consider is that the neurological symptoms of gluten intolerance take longer to resolve than the gastrointestinal, and you have to be patient with these.

I would certainly consider that you are on the right track and you just need some refinements, tightening up on cross-contamination (eating out is a big one), and patience. :)

Thanks. I've almost stopped eating out and I'm careful. I can do better with cross contamination or oddball sources. I'll try tightening up more and avoiding dairy for a week and see what happens again. Most of the symptoms originally abated 90% but they have slowly come back and gotten even worse.

Its been almost 2 years that I've been off Gluten by label. I've seen the cross contamination warning on some foods that say they were processed on the same equipment as wheat but always avoid them. The Labcorp test where I failed the Deamidated Gliadin Abs, IgA with a 10.4 on a scale of 0-10 was roughly a week to 10 days after I stopped gluten foods 2 years ago. On the same test I passed the DGA IgG with a 2.2 on a 0-10 scale, the tTG IgA with 1 on 0-10 scale, a negative Endomysial antibody IgA, and Immunoglobulin A, Qn, Serum with 201 on a 70-400 scale.

The very high DGA IgA at 10.4 over the 0-10 scale top and after stopping gluten suggested a gluten sensitivity but probably not Celiac. Last year the Kaiser GI doc did the biopsy twice ( top and bottom of intestines) which seemed to lead to the lack of further gluten interest plus its hard to push docs if they don't believe. I don't think they believe gluten immune reactions cause problems without the celiac absorption problem. My research says that the immune response just due to the gluten protein can cause many problems without Celiac damage to the intestines. But it seems many doctors don't buy that and also don't buy that small cross contamination can cause such severe symptoms. I'm going to get the comprehensive panel again and see if anything has changed and really tighten up for a week or so.

I know that no matter what the tests say, the bottom line is avoidance but I've tried very hard. It certainly is possible that I'm getting little bits of gluten here and there due to OTC meds, utensils, poor labeling etc... but its sure a small amount. Since the DGA test did come up positive and very high plus the original symptoms did get much better, I'm about 95% certain gluten is still involved. I do wonder if any of the blood or other tests can give me more of a hint on concentrating on cutting out another food. Are any of the food panels any good? Given the trouble I've had with gluten, I'm concerned I'm shooting in the dark just avoiding say dairy etc.. as I've tried that multiple times. It sure would be nice to get a pointer from a test and then really bear down on avoiding that so its not so wide open. I'm hoping to find a doctor who really has dealt with this and knows truly how best to attack it and how stringent as opposed to giving up after a few tests which have both false positives and false negatives.

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Do you still need to use CPAP or were your sleep problems resolved by going gluten-free? Jus wondering.

Great post by Mushroom,

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Last year the Kaiser GI doc did the biopsy twice ( top and bottom of intestines) which seemed to lead to the lack of further gluten interest plus its hard to push docs if they don't believe. I don't think they believe gluten immune reactions cause problems without the celiac absorption problem. My research says that the immune response just due to the gluten protein can cause many problems without Celiac damage to the intestines. But it seems many doctors don't buy that and also don't buy that small cross contamination can cause such severe symptoms.

I am taking a copy of this study to my Dr. appointment next month. Don't know if it will help, but it can't hurt. It shows gluten sensitivity to be a separate and valid diagnoses apart from celiac.

http://www.biomedcentral.com/1741-7015/9/23/abstract

Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity

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Do you still need to use CPAP or were your sleep problems resolved by going gluten-free? Jus wondering.

Great post by Mushroom,

No it didn't because I already had surgery. I was unable to sleep with CPAP so had surgery prior to my Gluten discovery. Prior to the surgery, I had a sleep study and also purchased a $300 pulse-oximeter which monitored my movements, heart rate and most of all my Oxygen saturation while I slept. Normally ones O2 saturation should remain in the high 90% range all night. You shouldn't stop breathing unless you have some form of Apnea. What I discovered was that every night was different. I presume because of my position changing, it aggravated the Apnea blockage. I discovered I had nights with anywhere from 25-150 de-saturation's over a 5-7 hour night. Most nights were over 100 and at times it dropped into the 80's% and even 70's%. If I wore my pulse oximeter and held my breath awake to my limit, I was never able to get below 90%. That told me that in my sleep, I was effectively not breathing for well over 1 minute before my brain freaked out and awoke me. Whenever I saw a desat, there was typically a dramatic rise in my heart rate suggesting my brain wasn't too happy.

In any case, I had the surgery and now I occasionally check it and I might have 0-10 desats a night so its corrected. I've never read where there was a connection between Apnea and Gluten so I doubt they were related. It was just a coincidence but the symptoms do overlap because lack of sleep and O2 while sleeping can cause a myriad of problems.

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Surgery isn't always successful in resolving sleep apnea. What surgery did you have? Uvulopalatoplasty?

I had a surgery I'm fairly sure I wouldn't have had to have if I'd discovered my intolerance to gluten earlier. I wonder if celiac disease could be linked to sleep apnea. My father had it, and I always figured I inherited my problems from my dear mother.

Were you still eating gluten when you were monitoring yourself with the pulse ox?

And by the way, WTG. Desats to 70% is alarming, I know you already know that or you wouldn't have bought the glucometer. ;)

Good luck, you have me thinking about heritage now.

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Surgery isn't always successful in resolving sleep apnea. What surgery did you have? Uvulopalatoplasty?

I had a surgery I'm fairly sure I wouldn't have had to have if I'd discovered my intolerance to gluten earlier. I wonder if celiac disease could be linked to sleep apnea. My father had it, and I always figured I inherited my problems from my dear mother.

Were you still eating gluten when you were monitoring yourself with the pulse ox?

And by the way, WTG. Desats to 70% is alarming, I know you already know that or you wouldn't have bought the glucometer. ;)

Good luck, you have me thinking about heritage now.

I found one of the best surgeons on the West Coast, Kasey Lee. He was part of the original Stanford team that developed many of the surgical techniques. He has a private practice in Palo Alto CA near Stanford. The surgery was a combination of nasal and throat alterations based on his experience. The name of the throat surgery was a Pharyngoplasty but each one is a little different. It was not fun but it worked. You can see it at his site at:

http://www.sleepapneasurgery.com/pharyngoplasty.html

Yes I monitored myself after the surgery in 2007 and have spot checked it ever since. I discovered the Gluten problem in 2009 so I checked it with and without Gluten and pre-surgery and post surgery. The pulseoximeter results today are similar to those I've spot checked ever since the surgery and routinely show less than 10 desats and I've never seen one below 90 since the surgery.

Yes 70's is alarming since no matter how hard I try to hold my breath while wearing the pulseoximeter, I cannot get it to go below the low 90's. Hitting the high 70's was rare while the 80's were common. The PC software with the pulseoximeter which I downloaded in the morning allowed me to scroll through the night in 15 minute intervals. I could look at the time the desat began, watch it drop, then rise after my heart rate would almost double. They typically lasted 45-1.5 seconds. If my heart rate was sitting at 60, then about halfway into the desat, my hearty rate would begin climbing and then the movement detector showed movement and then the desat ended and eventually my heart rate dropped back to 60. It was scary to watch.

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