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Feedback Please -- All Tests Negative

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I was all prepared to go gluten-free today, which is a massive undertaking for me since I am currently eating 12 foods and have huge vitamin deficiencies that I can't treat it as I react badly to vitamins, and I will be removing two out of my 12 foods -- the only and rich foods, for that matter -- but the my doctors office called and said that my saliva test was negative :-(

Several years ago, I had a blood test and a biopsy for celiac and they were both negative. Is there any point for me to try the diet when all of the conventional tests suggest that I don't have gluten intolerance? Yes, I know that intolerance is different from official celiac, but I'm loath to try that diet without some sort of proof that I have the condition, although I know that if I react positively to the diet, that would constitute "proof."

Anyway, how many other people on here have gone gluten-free when all of the other tests have indicated that gluten was not problem? Thanks. Sigrid (not sure to be happy about this negative result or unhappy!)

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Sigrid,

Since you are down to 12 foods anyway, why not take the plunge and see if it helps.

Don't forget, you will be adding new foods too. Quinoa, buckwheat, amaranth, millet ...

Add papaya, mango and pineapple .. I can't eat a lot of pineapple, but ... they have natural digestive enzymes.

Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Are the saliva tests always accurate? I don't know much about them.

I had a negative blood test but positive results at EnteroLab.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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Marcia, I can't add in any of the foods that you mentioned. All of those grains are ridiculously high in carbohydrates for me with the possible exception of buckwheat but I'm too afraid to try it. The others make my blood sugar very bad and I never touch fruit -- it's just like drinking a Coca-Cola for me. Fruit is poisonous to my blood sugar. My hypoglycemia is quite severe.

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What kind of symptoms are you having? Why do you think it's gluten intolerance?

Carla, I've had digestive problems for 25 years. I was diagnosed with chronic fatigue syndrome and fibromyalgia in 1986 but I've had them since 1982. I have early osteoporosis, Gross vitamin deficiencies, and B12 deficiency, along with daily killer headaches. HOWEVER, I had two stomach surgeries that gave me severe hypoglycemia.

I only eat 12 foods because all of the others give me migraines, sneezing attacks, or -- the majority -- are much too high in carbohydrates for me. I eat about 50 g or less of carbohydrates a day in order to reduce the symptoms of my hypoglycemia (I can't control it -- my blood sugar is still off all the time but my GI guy says that it's fairly normal for my type of gastric surgery. It's also possible and probable that might B12 deficiency and osteoporosis are a result of the surgery, but the doctors wanted to be certain that I don't have celiac since the fibromyalgia, headache, additional exhaustion, feeling crappy stuff all started years before the surgery which I had in 1990.)

Complicated medical history because I was hit by a drunk driver. Totally healthy before that and then completely disabled with dozens of symptoms since then. Anyway, I'm not sure if I should take the plunge and try the diet. It's not as easy as anyone makes it sound because I can't substitute carbohydrates. I would have to go off my wheat bread and dry crackers and go grain free, which will drop my blood sugar and make me feel really sick. But of course it's the only way to really find out if I feel better gluten-free. I know perfectly well that medical tests aren't completely accurate. My dilemma.

Thanks for your input. Sigrid

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Many people with CFS and Fibro have Lyme Disease, have you been tested for it? It can also cause many other intolerances, including gluten. I know of six of us here on this board who have it ... so it's not uncommon.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Carla, I've had digestive problems for 25 years. I was diagnosed with chronic fatigue syndrome and fibromyalgia in 1986 but I've had them since 1982. I have early osteoporosis, Gross vitamin deficiencies, and B12 deficiency, along with daily killer headaches. HOWEVER, I had two stomach surgeries that gave me severe hypoglycemia.

I only eat 12 foods because all of the others give me migraines, sneezing attacks, or -- the majority -- are much too high in carbohydrates for me. I eat about 50 g or less of carbohydrates a day in order to reduce the symptoms of my hypoglycemia (I can't control it -- my blood sugar is still off all the time but my GI guy says that it's fairly normal for my type of gastric surgery. It's also possible and probable that might B12 deficiency and osteoporosis are a result of the surgery, but the doctors wanted to be certain that I don't have celiac since the fibromyalgia, headache, additional exhaustion, feeling crappy stuff all started years before the surgery which I had in 1990.)

Complicated medical history because I was hit by a drunk driver. Totally healthy before that and then completely disabled with dozens of symptoms since then. Anyway, I'm not sure if I should take the plunge and try the diet. It's not as easy as anyone makes it sound because I can't substitute carbohydrates. I would have to go off my wheat bread and dry crackers and go grain free, which will drop my blood sugar and make me feel really sick. But of course it's the only way to really find out if I feel better gluten-free. I know perfectly well that medical tests aren't completely accurate. My dilemma.

Thanks for your input. Sigrid

Sigrid,

Have you picked up any books on celiac disease? There are a couple of good ones I'd recommend...they may give you some info on the relationship between celiac and hypoglycemia...

Celiac Disease: A Hidden Epidemic by Dr. Peter Green and Rory Jones is an excellent book that thoroughly explains celiac and its relationship to other disorders, testing, and treatment.

Dangerous Grains by James Braly and Ron Hoggan is another excellent book. Book Description: Dangerous Grains turns the U.S. Food Guide Pyramid upside down by exposing the myriad health risks posed by gluten grains (wheat, rye, barley, spelt, kamut, and triticale). The authors, leading experts in the field of food allergies, and celiac disease, present compelling evidence that our grain-centered diet is to blame for a host of chronic illnesses. Largely misunderstood and frequently misdiagnosed, these disorders can be prevented and reversed by the useful program outlined in this important new book.

Michelle

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YES!!! Definitely try the diet. All my tests were negative too.

I had 18 years of IBS type symptoms, 2-3 years of mobility issues to the point where I was sure I was going to end up in a wheelchair within five years, and a whole bunch of other symptoms that ended up being gluten-related for me (insomnia, headaches, anxiety).

When I went gluten-free it all went away. It was like somebody flipped a switch. I've been gluten-free since January 06 and I'm never looking back.

Eating gluten-free is a healthy way to eat, so you're not risking anything by eating gluten-free for a while to see if it helps.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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I was all prepared to go gluten-free today, which is a massive undertaking for me since I am currently eating 12 foods and have huge vitamin deficiencies that I can't treat it as I react badly to vitamins, and I will be removing two out of my 12 foods -- the only and rich foods, for that matter -- but the my doctors office called and said that my saliva test was negative :-(

. Sigrid (not sure to be happy about this negative result or unhappy!)

Sigrid-

My mother was down to rice and water before she went gluten free. It took her really understanding the diet (not getting hidden starches) and time for healing and symptoms to go away. But, for her she was able to add back foods she had been off of for a long tome. Her GI said it is like a rain barrel. Your system gets so kicked up that one more drop of rain (or food) will overflow out of the barrel and not be tolerated becasue the system is so upset. I'd give it a try. I understand why you do not want to. Really I do.

I am reluctant too. And I am not restricted.

(On a different note. Our grandmother was named Sgrid and one of her daughter was named Sigfrid. It's fun for me to see her name.)

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Guest nini

I was very hypoglycemic before my diagnosis and since going gluten free, they hypoglycemia has resolved itself. Also, a lot of other foods that I thought I was intolerant to before, are now ok since getting the gluten out of my system.

You very well could be gluten intolerant. It could be the whole answer or it could be part of the picture, but everything you describe definitely points to a reason to be suspicious of it.

Before my diagonsis I was just eating dry toast and crackers for the most part... or Sourdough sandwiches with avocados on them... it was about all I thought I could keep down although technically I wasn't keeping anything down. I had been diagnosed with IBS and Fibromyalgia and was morbidly obese. I've since lost 110 pounds and almost all of my health issues have resolved and I found that I can actually eat citrus fruits without getting ill and I can actually eat tapioca, millet, and buckwheat...

Yes it was rough going at first because I was very limited with what I could eat, and there was a lot of times I just ate bananas and rice and that was it. But I'm telling you, it was like a lightbulb going on when I realized how much better I felt off of gluten (and it wasn't immediate either) and it was amazing when I was able to start adding varieties of food back into my diet.

the testing is not always accurate, positive dietary response is the most valid indicator of if you have a gluten problem, and going off gluten won't affect testing for OTHER health issues, only Celiac. Besides, it's better to not have a definite diagnosis on your permanent health record as you can be denied health insurance (or even life insurance) it happened to me..

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I'm feeling so ill with a migraine that I hope that people will excuse me if I don't answer replies individually. I'm going to throw everything together in this note.

Yes, I was tested for Lyme disease several years ago and it was negative.

Rice and bananas could be better than chicken all day. LOL. But I get your point and I appreciate it.

Yes, I read Peter Green's book. We'll look into some others. Sorry, I I just feel too sick to continue but I appreciate everyone's input and will take it into account. Thanks :-) Sigrid

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YES!!! Definitely try the diet. All my tests were negative too.

I had 18 years of IBS type symptoms, 2-3 years of mobility issues to the point where I was sure I was going to end up in a wheelchair within five years, and a whole bunch of other symptoms that ended up being gluten-related for me (insomnia, headaches, anxiety).

When I went gluten-free it all went away. It was like somebody flipped a switch. I've been gluten-free since January 06 and I'm never looking back.

Eating gluten-free is a healthy way to eat, so you're not risking anything by eating gluten-free for a while to see if it helps.

Nancy

To everyone out there debating on whether or not to try the diet please pay attention to what Nancy is saying. You don't need permission to try this. If feeling better is the "most" important thing you seek then at least give the diet a chance. If it works then you can always go back to gluten and seek an official diagnosis or if you are like her and are satisified that feeling good is more important then don't look back and get on with your life. As far as I am concerned there is absolutely "no" substitute for feeling good and that includes all the foods I gave up.

Tom

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Yes, I was tested for Lyme disease several years ago and it was negative.

I don't want to be a pest ... but there is only one lab in the country that exclusively tests for Lyme and is considered to be the most reliable -- www.igenex.com ... all other labs are iffy. Plus, because Lyme is a "new" illness, there are still a lot of politics surrounding it and most docs can't read the test results adequately. If I were you, speaking of someone who went undiagnosed for more than 30 years, I would ask to see the lab results as the interpretation of them is more subjective than something like a pregnancy test. If it was suspected at one point in time, you need to be sure the tests were accurately done.

Tom and Nancy are right ... it's free and relatively easy to try the diet. I feel better eating gluten-free, not completely healthy because of my other issues, but a lot better than I did eating gluten.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I don't want to be a pest ... but there is only one lab in the country that exclusively tests for Lyme and is considered to be the most reliable -- www.igenex.com ... all other labs are iffy. Plus, because Lyme is a "new" illness, there are still a lot of politics surrounding it and most docs can't read the test results adequately. If I were you, speaking of someone who went undiagnosed for more than 30 years, I would ask to see the lab results as the interpretation of them is more subjective than something like a pregnancy test. If it was suspected at one point in time, you need to be sure the tests were accurately done.

Tom and Nancy are right ... it's free and relatively easy to try the diet. I feel better eating gluten-free, not completely healthy because of my other issues, but a lot better than I did eating gluten.

Tom and Nancy -- you're right. Why do I need the validation from doctors who have misdiagnosed me almost all of my life? Slapping myself on the forehead. I am going to go gluten-free but I just can't cope with it emotionally before my birthday and the holidays. I'll do it in about 10 days.

Carla -- my doctor would never give me a copy of those results. It was done by someone I don't even see now. Wouldn't I have to have been bitten by a tick? How are they treating the Lyme for you -- antibiotics? -- and how did you manage to get tested for it?

Sigrid

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Carla -- my doctor would never give me a copy of those results. It was done by someone I don't even see now. Wouldn't I have to have been bitten by a tick? How are they treating the Lyme for you -- antibiotics? -- and how did you manage to get tested for it?

Sigrid

You'll LOVE this ... my doctor told me that all my illness was psychosomatic. I ordered the test from the lab, it was sent to my house, I had to have a doctor mail it back in with my blood, so I took it to my doctor and asked her to test me. She said that because my illness was psychosomatic, it was important that I get any testing done that I thought needed to be done so that I could get the idea out of my head, so she did the test. IT WAS POSITIVE!!!

You would have had to been bitten by a tick ... but the tick is as small as the period at the end of this sentence and about 50% of Lyme patients don't remember a tick bite.

I think it's your right to see a copy of your labs. I've never had a doctor refuse me ... I think, but don't know for sure, that they have to, but might charge you for the service.

I see a Lyme specialist next month. I am guessing it will be antibioitics. No one here knows how to treat it, so I'm flying to see a specialist in NY.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Re: the question about getting the actual medical records: HIPAA law states patients have a right to access their medical records. If your doctor won't give them to you, he's not within the law. Also, they are not allowed to charge you a fee for providing copies, excepting a "reasonable" fee for the paper used and possibly for the postage. Even if you don't see this doctor anymore, those medical records should still exist somewhere and if you wish to see them you have a right to.

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You'll LOVE this ... my doctor told me that all my illness was psychosomatic. I ordered the test from the lab, it was sent to my house, I had to have a doctor mail it back in with my blood, so I took it to my doctor and asked her to test me. She said that because my illness was psychosomatic, it was important that I get any testing done that I thought needed to be done so that I could get the idea out of my head, so she did the test. IT WAS POSITIVE!!!

You would have had to been bitten by a tick ... but the tick is as small as the period at the end of this sentence and about 50% of Lyme patients don't remember a tick bite.

I think it's your right to see a copy of your labs. I've never had a doctor refuse me ... I think, but don't know for sure, that they have to, but might charge you for the service.

I see a Lyme specialist next month. I am guessing it will be antibioitics. No one here knows how to treat it, so I'm flying to see a specialist in NY.

That's terrific that you finally got an accurate diagnosis after all those years. Boy, your doctor must've had a all over her face! She deserved it. I hate it when doctors say that things are psychosomatic when they haven't properly tested for everything.

If I need a doctor to authorize the blood work, I'm screwed because I don't know anyone who will do that. Have to brainstorm. BTW, why would my doctor check for my IGA levels? Is that related to celiac or gluten or just to my allergies & general immunity?

Hope you're feeling MUCH better after you see the specialist. Is that a long way to travel for you? I hope this new person is really excellent. Fingers crossed for you. Sigrid

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Sigrid, I don't know much about IgA beyond the IgA they check for gluten intolerance, so I can't answer that. Maybe someone else will jump in.

I live in Ohio, so it's quite a trip for me, but worth it to see someone who specializes in Lyme. It's all he does. I used the same lab he uses, and my doc here is willing to do the testing for co-infections through that lab, so I should have most of the bloodwork done before I even get there.

BTW, I haven't actually seen my doc here yet ... I just talked to the nurse at her office. I need to tell them that they have to report it to the CDC, so I guess I'll need to see her soon. :)

To simplify things, I just paid for the blood test directly to the lab, so my doc literally just needed to take the blood and sign off on the test. Other than that, I did the rest.

I hope you find your answers soon. It's really, really tough to be chronically ill. No one really understands what it's like to wake up feeling bad day after day.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Sigrid,

Have you picked up any books on celiac disease? There are a couple of good ones I'd recommend...they may give you some info on the relationship between celiac and hypoglycemia...

Celiac Disease: A Hidden Epidemic by Dr. Peter Green and Rory Jones is an excellent book that thoroughly explains celiac and its relationship to other disorders, testing, and treatment.

Dangerous Grains by James Braly and Ron Hoggan is another excellent book. Book Description: Dangerous Grains turns the U.S. Food Guide Pyramid upside down by exposing the myriad health risks posed by gluten grains (wheat, rye, barley, spelt, kamut, and triticale). The authors, leading experts in the field of food allergies, and celiac disease, present compelling evidence that our grain-centered diet is to blame for a host of chronic illnesses. Largely misunderstood and frequently misdiagnosed, these disorders can be prevented and reversed by the useful program outlined in this important new book.

Michelle

Great advice. I too was going to suggest you read Danerous Grains. You need to really understand gluten intolerance, even if you don't have Celiac. I'm gluten free even though my tests came up negative. I feel so fortunate that I made the decision because I finally feel awesome. Also, I was hypoglycemic like you, and it's getting better and better every day! That's one of the benefits of being gluten free . . . you can read all about it in the book :rolleyes:


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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most people with celiac have elevated IgA levels of TTG----unless you are IgA deficient-----this is probably why your doctor checked your IgA levels.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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Sigrid, I don't know much about IgA beyond the IgA they check for gluten intolerance, so I can't answer that. Maybe someone else will jump in.

I live in Ohio, so it's quite a trip for me, but worth it to see someone who specializes in Lyme. It's all he does. I used the same lab he uses, and my doc here is willing to do the testing for co-infections through that lab, so I should have most of the bloodwork done before I even get there.

BTW, I haven't actually seen my doc here yet ... I just talked to the nurse at her office. I need to tell them that they have to report it to the CDC, so I guess I'll need to see her soon. :)

To simplify things, I just paid for the blood test directly to the lab, so my doc literally just needed to take the blood and sign off on the test. Other than that, I did the rest.

I hope you find your answers soon. It's really, really tough to be chronically ill. No one really understands what it's like to wake up feeling bad day after day.

Carla, when it comes to your health, as long as you have the money and the physical ability to get there, it's critical to get the best care. I wrote to the Mayo Clinic recently and sent them all of my lab tests and I was willing to spend thousands of dollars to go out there but they said that they couldn't help me. Is this man in New York can help you, go for it! That's fantastic.

I want to ask you if you use a particular gluten-free lipstick or if just Vaseline on the lips is okay. I started a thread about that somewhere but I keep losing it because I'm such a mental case and I'm just too ill to follow things.

Thanks and will be keeping my fingers crossed for your trip to New York! Sigrid

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most people with celiac have elevated IgA levels of TTG----unless you are IgA deficient-----this is probably why your doctor checked your IgA levels.

Hmm. Interesting. The doctor also said that she wonders if my IGA levels interfered with the validity of the saliva tests. Confusing for me :-( Thanks! Sigrid

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Great advice. I too was going to suggest you read Danerous Grains. You need to really understand gluten intolerance, even if you don't have Celiac. I'm gluten free even though my tests came up negative. I feel so fortunate that I made the decision because I finally feel awesome. Also, I was hypoglycemic like you, and it's getting better and better every day! That's one of the benefits of being gluten free . . . you can read all about it in the book :rolleyes:

Michelle, I put my name in at the library for that book. There's a bit of a waiting list so I can't get it right away... So glad that you are feeling better even though your tests were negative and that your hypoglycemia has improved. My hypoglycemia is really very severe and it was probably caused by gastric surgery because my insulin went 22 times two high in my blood sugar fell to 28 mg within less than two hours of drinking the glucose.

Anyway, I do understand about gluten intolerance HOWEVER that wouldn't cause osteoporosis, deficiency in vitamin A., deficiency in vitamin D. and calcium, or would it? Would gluten intolerance cause fibromyalgia, constant headaches and chronic fatigue syndrome even without the distraction to the villi? Because those are my symptoms and I was so much praying to have celiac in order to explain them.

Thanks. Please excuse typos. Sigrid

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