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9 months on gluten free diet and NOT OK !

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Hi! I want to start this off by saying I'm sorry if I post this in the wrong part of the forum. I'm new to this website. Also...this may be long (and tmi but I've noticed that's not a problem on this forum, ha). My apologies.


I decided to visit my doctor in January of this year, 10 months ago, for stomach problems. For almost three months up until that point I was having many problems with my stomach. Constant stomach aches, constant indigestion, headaches, brain fog, diarrhea....you name it. The worst was the diarrhea. I've been prone to anal fissures since I was little so you can imagine how that made me feel, but that's a whole other story. Anyways, I did a poop test, blood tests and was sent home with medication for indigestion. A week later, I got a call saying I was tested positive for celiac disease.

Now, I was out on a waiting list for a specialist for SIX weeks. During that time, I put myself off gluten. I HAD too. I was done being sick and hurting myself. When I finally let with the specialist, she gave me a lot of green flags. First, even after telling her my problem was DIARRHEA she gave me medication for constipation. Uh...ok. Second, she told me I had to go back on gluten until it was time for me to get the endoscopy. Even after I sat there for twenty minutes with my mom beside me (I'm 18) and cried and cried and cried about how frustrated I was, she showed no remorse in telling me I had to get back on gluten for the test to work properly. So, I did what she told me. I started off slow and only fed my body little bits of gluten at first and got sick. I ate half of a sandwich and got sick for TWO days. The second red flag was when I tried to get a hold of them for TWO weeks and no reply. Finally, when I did get on the phone with them, she said it was necessary for me to digest gluten because they need to know whether it was celiac or IBS. Even if it was IBS my trigger food would be gluten. Anyways, I ended up calling off the endoscopy. They were evening dodgy and seemed like they didn't give a crap about me. 

I wanted to explain that just to let you guys know that the only testing I've had done for celiac was the blood test. I haven't gotten official confirmation from it but I would be surprised if that's not what it was. I've had stomach problems my whole life, I've had juvenile arthritis in my left knee, I have suffered from iritis and optic neuritis which again, is a whole other ordeal. Actually, I suffered from the optic neuritis a few months before my stomach got really bad. And then again after I was first diagnosed. Wow, it's been a hard year and a half. 

Ok, back story over. Sorry if that was unnecessary and confusing. I just wanted to get out my journey so far. 

It's been about nine months now and I'm still suffering. The initial sickness DEFINITELY improved. There was a few months where I felt amazing and I didn't have a pain in the world after going gluten free but I feel like it's all tumbling around me. I still get glutened FREQUENTLY. I got glutened today for the second time in one week and it's the worst thing. I feel sick, broken, frustrated. It feels like I'm never going to get better. Constant migraines, stomach aches, diarrhea....everything that makes me anxious. 

Let's talk about poop for a second. Green, acidic poop. It hurts!!! Sorry if this is gross but i feel like this is important. 

My anxiety is through the roof and I feel lost. I don't feel healthy. I don't feel like an eighteen year old girl should. I'm naturally skinny and I can't afford to lose any more weight. I've been 110 lbs since I was 12 and I'm now in between 103-105 lbs. I live with family but it's very hard to bring this up with them. They are the ones that buy my food since I am currently in nursing school and we have a deal. If I'm in school, they buy my food. Thanks guys!! gluten-free food is expensive enough, I don't know what else to do.

This is so long and I am rambling. I'm so sorry. Anybody have tips?

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2 hours ago, gfpuddin said:

Hi! I want to start this off by saying I'm sorry if I post this in the wrong part of the forum. I'm new to this website. Also...this may be long (and tmi but I've noticed that's not a problem on this forum, ha). My apologies.


I decided to visit my doctor in January of this year, 10 months ago, for stomach problems. For almost three months up until that point I was having many problems with my stomach. Constant stomach aches, constant indigestion, headaches, brain fog, diarrhea....you name it. The worst was the diarrhea. I've been prone to anal fissures since I was little so you can imagine how that made me feel, but that's a whole other story. Anyways, I did a poop test, blood tests and was sent home with medication for indigestion. A week later, I got a call saying I was tested positive for celiac disease.

Now, I was out on a waiting list for a specialist for SIX weeks. During that time, I put myself off gluten. I HAD too. I was done being sick and hurting myself. When I finally let with the specialist, she gave me a lot of green flags. First, even after telling her my problem was DIARRHEA she gave me medication for constipation. Uh...ok. Second, she told me I had to go back on gluten until it was time for me to get the endoscopy. Even after I sat there for twenty minutes with my mom beside me (I'm 18) and cried and cried and cried about how frustrated I was, she showed no remorse in telling me I had to get back on gluten for the test to work properly. So, I did what she told me. I started off slow and only fed my body little bits of gluten at first and got sick. I ate half of a sandwich and got sick for TWO days. The second red flag was when I tried to get a hold of them for TWO weeks and no reply. Finally, when I did get on the phone with them, she said it was necessary for me to digest gluten because they need to know whether it was celiac or IBS. Even if it was IBS my trigger food would be gluten. Anyways, I ended up calling off the endoscopy. They were evening dodgy and seemed like they didn't give a crap about me. 

I wanted to explain that just to let you guys know that the only testing I've had done for celiac was the blood test. I haven't gotten official confirmation from it but I would be surprised if that's not what it was. I've had stomach problems my whole life, I've had juvenile arthritis in my left knee, I have suffered from iritis and optic neuritis which again, is a whole other ordeal. Actually, I suffered from the optic neuritis a few months before my stomach got really bad. And then again after I was first diagnosed. Wow, it's been a hard year and a half. 

Ok, back story over. Sorry if that was unnecessary and confusing. I just wanted to get out my journey so far. 

It's been about nine months now and I'm still suffering. The initial sickness DEFINITELY improved. There was a few months where I felt amazing and I didn't have a pain in the world after going gluten free but I feel like it's all tumbling around me. I still get glutened FREQUENTLY. I got glutened today for the second time in one week and it's the worst thing. I feel sick, broken, frustrated. It feels like I'm never going to get better. Constant migraines, stomach aches, diarrhea....everything that makes me anxious. 

Let's talk about poop for a second. Green, acidic poop. It hurts!!! Sorry if this is gross but i feel like this is important. 

My anxiety is through the roof and I feel lost. I don't feel healthy. I don't feel like an eighteen year old girl should. I'm naturally skinny and I can't afford to lose any more weight. I've been 110 lbs since I was 12 and I'm now in between 103-105 lbs. I live with family but it's very hard to bring this up with them. They are the ones that buy my food since I am currently in nursing school and we have a deal. If I'm in school, they buy my food. Thanks guys!! gluten-free food is expensive enough, I don't know what else to do.

This is so long and I am rambling. I'm so sorry. Anybody have tips?

I am sorry that you are sick.  There is a steep learning curve to the gluten free diet.  Please read the Newbie 101 thread located under the coping section of the forum.  Gluten free food is not expensive.  It is best that until you feel better, to avoid processed gluten-free foods.  Learn about cross contamination.  Do not eat out for a while.  

I hope you feel better soon.  

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Sounds like you might have become super sensitive. And have found one of the many incompetent doctors out there that lack knowledge  and empathy for those with celiac. I suggest finding a new doctor if you can, I went through 5 before finding a decent one that at least has worked with celiacs. Try eating only raw foods or trusted brands that have the gluten-free certification seal. Watch out for random sources like shampoos, soaps, cleaners, lotions, supplements you might be touching something that has gluten in it then touching your food. Gluten is not a germ, bacteria, or a crumb it is a protein, for people hyper sensitive think about trying to clean blood off where the proteins can not be found by a forensics team -_- I found butcher/freezer paper on prep surfaces and disposable utensil when out of my kitchen help, along with a dedicated griddle I take when I head out somewhere else and have to fix my own meals. I can message you a list of brands I trust as someone super sensitive and tell you a few places I found to be odd sources of gluten like sometimes fresh vegetables get exposed at the market by idiots grabbing everything without washing hands or after eating a doughnut from the bakery (witnessed this at my local HEB where a customer was feeling all the bell peppers and avocados while munching on a doughnut in the other hand) so clean all you vegetables and fruits or buy frozen from SAFE companies. Watch out for oats, in the US a lot of companies use the mechanical separation method and call it gluten-free oats. Fact is there are reports of people still getting sick from gluten-free cheerios etc. That use oats from this method. I find myself only trusting gluten-free Harvest here and then still avoid more then a tiny bit when I do baking for others and need tasting.  Your not alone, times can be tough you just need to hang in there and be a bit more careful. Good luck many of us do have similar issues and you are not alone we are here to give you our point of view, advice, and help you learn from our experiences as well as add in your own to the community.

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Keep looking for a GI doctor that you trust.  Don't go back to someone you don't trust!  I had a GI doctor who thought I had anxiety (I was a woman whose colonoscopy and endoscopy came back ok so I was crazy) and put me on highly addictive pain medicine without telling me... he told me to trust him and it was to deal with the pain and led me to believe it was an IBS medicine.  My primary doctor caught what the medicine was and pulled me off of it ASAP and I had to go through serious withdrawal for a month.  I'm the least anxious person you could meet.  Go with your gut!  Don't trust someone just because they have the name doctor.
If you sense something isn't right then it probably isn't.  That being said a good GI doctor is hard to find... I still haven't found one!  But, I keep trying.

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Out of interest how definitive was your blood test result? Mine was off the charts but have a feeling I'll be told to go back on gluten for the biopsy test too after being poorly advised (common theme that) by doctors.

So many posts I've seen are about gaining weight yet I'm more in the same boat as you, worried about losing it as that seems to be the trend so far since I started suspecting gluten by cutting out bread based on my own research and gut feeling (excuse the pun!)

It does seem self-research and support on forums like this are the best way forward, health "professionals" aren't inspiring much confidence in me either at the moment so you're not alone feeling that way.

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Find yourself a good nutritionist who is experienced with Celiac.  You probably have nutritional deficits which may include any or all of the B vitamins, Fat soluble vitamins, and minerals like zinc, magnesium, and possibly calcium.  Just taking a multivitamin isn't going to fix those.  ( demyelinating ailments such as optic neuritis can be due to inadequate B vitamins such as B12)

https://www.ncbi.nlm.nih.gov/pubmed/16198909

Very often the vili have been damaged such that might have secondary food sensitivities such as dairy, soy, eggs etc.  Your vili might not be healing due to nutritional problems.  A nutritionist will  be able to help you identify a good short term diet and supplements and possibly get you B12 or other shots.

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On 10/10/2016 at 4:36 AM, Ennis_TX said:

Sounds like you might have become super sensitive. And have found one of the many incompetent doctors out there that lack knowledge  and empathy for those with celiac. I suggest finding a new doctor if you can, I went through 5 before finding a decent one that at least has worked with celiacs. Try eating only raw foods or trusted brands that have the gluten-free certification seal. Watch out for random sources like shampoos, soaps, cleaners, lotions, supplements you might be touching something that has gluten in it then touching your food. Gluten is not a germ, bacteria, or a crumb it is a protein, for people hyper sensitive think about trying to clean blood off where the proteins can not be found by a forensics team -_- I found butcher/freezer paper on prep surfaces and disposable utensil when out of my kitchen help, along with a dedicated griddle I take when I head out somewhere else and have to fix my own meals. I can message you a list of brands I trust as someone super sensitive and tell you a few places I found to be odd sources of gluten like sometimes fresh vegetables get exposed at the market by idiots grabbing everything without washing hands or after eating a doughnut from the bakery (witnessed this at my local HEB where a customer was feeling all the bell peppers and avocados while munching on a doughnut in the other hand) so clean all you vegetables and fruits or buy frozen from SAFE companies. Watch out for oats, in the US a lot of companies use the mechanical separation method and call it gluten-free oats. Fact is there are reports of people still getting sick from gluten-free cheerios etc. That use oats from this method. I find myself only trusting gluten-free Harvest here and then still avoid more then a tiny bit when I do baking for others and need tasting.  Your not alone, times can be tough you just need to hang in there and be a bit more careful. Good luck many of us do have similar issues and you are not alone we are here to give you our point of view, advice, and help you learn from our experiences as well as add in your own to the community.

I'm currently looking at a new family doctor around me. My current doctor has been insanely unhelpful lately. His office is also a walk-in clinic and even when I have an appointment, I'm still waiting forever in his offices. As a walk-in, tops 4 hours. It's ridiculous!! I have no idea where to start researching family doctors that could also have knowledge of celiac. Guess I'll be making some phone calls...

On 10/10/2016 at 8:10 PM, flutegal64 said:

Keep looking for a GI doctor that you trust.  Don't go back to someone you don't trust!  I had a GI doctor who thought I had anxiety (I was a woman whose colonoscopy and endoscopy came back ok so I was crazy) and put me on highly addictive pain medicine without telling me... he told me to trust him and it was to deal with the pain and led me to believe it was an IBS medicine.  My primary doctor caught what the medicine was and pulled me off of it ASAP and I had to go through serious withdrawal for a month.  I'm the least anxious person you could meet.  Go with your gut!  Don't trust someone just because they have the name doctor.
If you sense something isn't right then it probably isn't.  That being said a good GI doctor is hard to find... I still haven't found one!  But, I keep trying.

My doctor and I went through many possibilities before he decided the blood test. As I mentioned above, he's been extremely impractical EXCEPT for the suggestion of the blood test. Beforehand, we toyed with the idea of anxiety, which I have. He thought it was messing with my stomach but never prescribed meds to help it....shrug. Then it was bouncing back and forth between stomach bugs, bacteria blah blah. I just kept getting sicker and sicker until one day I had had enough and I told him that. Blood test came back positive, no DUH.

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On 10/12/2016 at 2:15 PM, SusanNash said:

Find yourself a good nutritionist who is experienced with Celiac.  You probably have nutritional deficits which may include any or all of the B vitamins, Fat soluble vitamins, and minerals like zinc, magnesium, and possibly calcium.  Just taking a multivitamin isn't going to fix those.  ( demyelinating ailments such as optic neuritis can be due to inadequate B vitamins such as B12)

https://www.ncbi.nlm.nih.gov/pubmed/16198909

Very often the vili have been damaged such that might have secondary food sensitivities such as dairy, soy, eggs etc.  Your vili might not be healing due to nutritional problems.  A nutritionist will  be able to help you identify a good short term diet and supplements and possibly get you B12 or other shots.

Thank you for the info! I should have mentioned above I also have a slight problem with dairy. Always have. I only took care of it after going gluten free because I was sick of eating and feeling crappy after. I stick to almond milk and lactose free but sometimes I sneak dairy in and I feel fine. I have noticed I get sick when my stomach is already not healthy after being glutened, for example. My mom made a lasagna a few weeks ago that I could NOT pass up and I felt relatively fine after but I'm still feeling gross from my double glutening and I had dairy milk with my cereal yesterday morning and it ruined me. Oh how the gut is a mystery....

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On 10/12/2016 at 1:23 PM, egs1707 said:

Out of interest how definitive was your blood test result? Mine was off the charts but have a feeling I'll be told to go back on gluten for the biopsy test too after being poorly advised (common theme that) by doctors.

So many posts I've seen are about gaining weight yet I'm more in the same boat as you, worried about losing it as that seems to be the trend so far since I started suspecting gluten by cutting out bread based on my own research and gut feeling (excuse the pun!)

It does seem self-research and support on forums like this are the best way forward, health "professionals" aren't inspiring much confidence in me either at the moment so you're not alone feeling that way.

Mine were off the charts too. He said he'd be surprised if I wasn't a celiac. The dumb GI doc on the other hand....she was passive aggressive about the whole thing. Said it was probably just IBS but my trigger food would be gluten. Either way, she wasn't very supportive at all.

As for the weight, I feel ya. I'm at 101 pounds right now. I lost 9 pounds in a matter of DAYS and it's freaking me out. I feel sick and frail :(

 

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1 minute ago, gfpuddin said:

Mine were off the charts too. He said he'd be surprised if I wasn't a celiac. The dumb GI doc on the other hand....she was passive aggressive about the whole thing. Said it was probably just IBS but my trigger food would be gluten. Either way, she wasn't very supportive at all.

As for the weight, I feel ya. I'm at 101 pounds right now. I lost 9 pounds in a matter of DAYS and it's freaking me out. I feel sick and frail :(

 

Still struggle with weight, eat a whole bunch of almond butter, coconut, seeds, protein powders, and various supplements suggested by my dietician, And find myself constantly having protein shakes and BCAAs. Managed to stop the loss, and pretty much only have muscles left. Just consuming $500+ in food a month on a bodybuilder like diet at 126lbs and 5'11" is a tad sad.

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Hi gluten-free Puddin,

You asked a good question! You wrote: "... As a follow-up, anyone know of other ways to test for celiac disease instead of biopsy? I fear going back on gluten for this damn test. It'll RUIN me."

The answer is "yes and no". I'll explain.

The test for Celiac Disease involves an invasive process of taking biopsies (small pieces) from one's small intestine, and then looking at those "slides", under a microscope, to see if the villi (tiny, microscopic finger like projections that line the interior of the small intestine) look blunted, flattened, or destroyed--which indicates "Celiac Disease".

However, even with true Celiac Patients, this test is NOT FOOLPROOF, because sometimes the biopsy samples are taken from "normal-looking" areas BETWEEN injured villi, and this can cause a "false negative" result/conclusion.

And, there are large numbers of gluten-sensitive patients who are "non-Celiac" in their type of gluten sensitivity, so their villi LOOK normal, under a microscope, but (according to Dr. Kenneth Fine, M.D.) their villi are NOT WORKING normally. Dr. Fine says (at his website, at enterolab.com) that such non-Celiac (but still gluten-sensitive) patients, have SUB-MICROSCOPIC (not visible even under a microscope) "subtle" damage to their villi, causing mal-absorption (a type of starvation!), and other bad symptoms.

Also, forcing a patient to eat gluten, is cruel, because it can cause horrible health injuries to both Celiac  and non-Celiac gluten-sensitive patients. AND I FEEL THAT TAKING BIOPSIES MAY NOT BE NECESSARY, TO DIAGNOSE GLUTEN SENSITIVITY.

So, what to do? Here are some ideas:

1) Avoid gluten "religiously" for 3 months, and follow the advice of all the good people here, to avoid your getting UNINTENTIONALLY "glutened", by accident, or, by "cheating".

2) As you yourself saw, it's probably better to ALSO avoid milk proteins, in case  you are "sensitive" to various milk proteins, too--which is common, among gluten-sensitive folks!

3) Dr. Kenneth Fine does have NON-INVASIVE stool sample testing, that looks for elevated numbers of "IgA" antibodies to gluten (&/or to other proteins, such as milk proteins, egg proteins, soy proteins, yeast proteins, etc.), in a STOOL SAMPLE.

If Dr. Fine's "EnteroLab" finds these larger than normal numbers of IgA antibodies to gluten, etc., in one's stool sample, then he concludes that one is probably gluten-sensitive, and should avoid gluten in all forms (food, drink, envelope glue, glue on stamps, etc.).

However--if a person has an "IgA deficiency", then, it means that the person's immune system isn't working properly, and their immune system is unable to tell the person's large intestine (also called the "gut", or the "colon") to MAKE the IgA antibodies in large numbers, against whatever protein the person really is "sensitive" to.

And this "IgA deficiency" can cause a "false negative" result in Dr. Fine's stool sample testing.

So, you might want to FIRST, get a blood test done, that is called "total secretory IgA", which I was told can tell you if you DO OR DON'T have an "IgA deficiency".

If you "pass" the "total secretory IgA" blood test, THEN, doing Dr. Fine's stool sample testing, would be MOST RELIABLE.

If, you 'fail" the "total secretory IgA" blood test, THAT means you have an "IgA deficiency", and the stool sample testing may miss finding that you are gluten-sensitive (false negative test result for the stool sample testing).

Dr. Fine's stool sample testing does not distinguish between Celiac & non-Celiac types of gluten sensitivity, but in my mind, that's OK, because EITHER TYPE of gluten-sensitivity causes pain and misery to many gluten sensitvie folks.

--------------------

So, if I were you, I would avoid gluten period, and avoid milk proteins period, for at least 3 months, and see what happens, while, at the same time:

Keep a "food diary", to see what foods &/or drinks might have troublesome proteins (in your case) in them! Note day, date, times, foods (including all ingredients), and what symptoms you get.

Then, you can avoid what makes you feel ill, and your small intestine can start to really heal and you can feel better and get better!

 

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13 hours ago, concernedlady said:

3) Dr. Kenneth Fine does have NON-INVASIVE stool sample testing, that looks for elevated numbers of "IgA" antibodies to gluten (&/or to other proteins, such as milk proteins, egg proteins, soy proteins, yeast proteins, etc.), in a STOOL SAMPLE.

 

If Dr. Fine's "EnteroLab" finds these larger than normal numbers of IgA antibodies to gluten, etc., in one's stool sample, then he concludes that one is probably gluten-sensitive, and should avoid gluten in all forms (food, drink, envelope glue, glue on stamps, etc.).

However--if a person has an "IgA deficiency", then, it means that the person's immune system isn't working properly, and their immune system is unable to tell the person's large intestine (also called the "gut", or the "colon") to MAKE the IgA antibodies in large numbers, against whatever protein the person really is "sensitive" to.

And this "IgA deficiency" can cause a "false negative" result in Dr. Fine's stool sample testing.

So, you might want to FIRST, get a blood test done, that is called "total secretory IgA", which I was told can tell you if you DO OR DON'T have an "IgA deficiency".

If you "pass" the "total secretory IgA" blood test, THEN, doing Dr. Fine's stool sample testing, would be MOST RELIABLE.

If, you 'fail" the "total secretory IgA" blood test, THAT means you have an "IgA deficiency", and the stool sample testing may miss finding that you are gluten-sensitive (false negative test result for the stool sample testing).

Dr. Fine's stool sample testing does not distinguish between Celiac & non-Celiac types of gluten sensitivity, but in my mind, that's OK, because EITHER TYPE of gluten-sensitivity causes pain and misery to many gluten sensitvie folks.

what would be the benefit to doing this if she has already tested positive to bloodwork which points towards celiac disease /potential celiac disease?

also wouldn't having a postive celiac bloodtest suggest that she is most likely not IgA deficient since being Deficient in IgA antibodies would also result in false negative blood results?

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On 10/10/2016 at 11:10 PM, flutegal64 said:

Keep looking for a GI doctor that you trust.  Don't go back to someone you don't trust!  I had a GI doctor who thought I had anxiety (I was a woman whose colonoscopy and endoscopy came back ok so I was crazy) and put me on highly addictive pain medicine without telling me... he told me to trust him and it was to deal with the pain and led me to believe it was an IBS medicine.  My primary doctor caught what the medicine was and pulled me off of it ASAP and I had to go through serious withdrawal for a month.  I'm the least anxious person you could meet.  Go with your gut!  Don't trust someone just because they have the name doctor.
If you sense something isn't right then it probably isn't.  That being said a good GI doctor is hard to find... I still haven't found one!  But, I keep trying.

you should report that doc to the state medical society. ASAP

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Hi gfpuddin,

Celiac disease is an immune system disorder.  It is a serious condition and can cause death if not treated.  That is a long term thing though, but It does result in a shortened lifespan and miserable quality of life if untreated.  It's not a disease you should treat lightly.

People who are celiac and eat gluten for a prolonged period of time before diagnosis may develop additional autoimmune disease also.  Or so it seems from the many members of this forum who have reported that happening to them.   There is a long list of associated diseases that occur more frequently with celiac disease.

More testing may be a poor choice in your case IMHO.  You are losing weight and having some serious symptoms.   Getting a full diagnosis won't help your situation if you don't take the gluten-free diet seriously.  It is a medical diet, not a weight loss diet or fa diet.  Your family needs to take it seriously  also, as you will need their help to avoid gluten and cross contamination.

The immune system is very powerful and sensitive.  The current guidelines in the USA are no more than 20 PPM in in a food to be labeled gluten-free.  That doesn't mean some people don't react to smaller amounts of gluten though.  Some do.

It's best to stick with whole foods and avoid dairy when starting the gluten-free diet IMHO.  I suggest you cook your own food so you know what is in it.  No eating out at restaraunts.  Basically don't trust other peoples cooking.  You won't heal and recover if you don't stay off gluten.  Some researchers found about 18 months for recovery from most symptoms.

You may be surprised how many things can improve in your health if you stay consistently gluten-free.  Sometimes people have symptoms they don't think are related to gluten but they go away after starting the diet.

The celiac disease genes are passed on from either parent or both sometimes,  So it is possible your parent (s) or siblings could have or could develop celiac disease also.  First degree relatives have a 15% higher chance of developing celiac disease than the general population.  So they should be tested also.

Welcome to the forum, there is lots to learn here! :)

Edited by GFinDC

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Make sure to read the Newbie 101 & follow the links contained within. It will help you learn how not to get glutened.

 

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I think when people "cheat" and say they don't have symptoms of "a little gluten" exposure, they are missing the larger picture.  As we age, our bodies naturally work less efficiently than they used to.  Now add in a gluten sensitivity which decreases our ability to process ALL food due to the damaged lining of the gut, and you have a gateway for all sorts of things to go wrong!  I'm probably one of the few people that had no real difficulty going from gluten to non-gluten foods.  I have always cooked from scratch.  People that rely on packaged food and fast food have a much harder time.  Being gluten free does not  HAVE to cost more!  We eat vegetables, fruits, potatoes and rice just like the rest of the world!  Whether gluten sensitive or not, all humans would do well to get back to basics and omit all that pre-packaged, processed food!  Food sensitivities/allergies of all kinds affect our ability to live quality lives.  Those you live with need to understand this.  My initial blood test was inconclusive and I refused to have further testing after starting to eliminate gluten from my life.  No amount of testing was needed to confirm what I had started to realize... gluten was affecting me!  Yes, some other sensitivities were also realized as time went on.  That was my body's way of telling me to get healthy---- OR ELSE!  Autoimmune diseases, such as gluten sensitivity, are often present in multiples in a susceptible person.  When you start to get one under control, the next one shows itself due to stripping away multiple symptoms.  It's a journey.  I didn't figure this out until I was in my mid 50's.  Some damage is done permanently.  When you find these things out younger, you can save yourself a lot of pain and complication by being diligent.  I know people that eat gluten at functions so as not to make a fuss!  I take my own food!  That includes to weddings and potlucks!  It's just not worth it!  I will be taking my own food to my two daughter's weddings next year... because I'm worth it!  YOU  are too!

Debbie

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10 hours ago, emma6 said:

what would be the benefit to doing this if she has already tested positive to bloodwork which points towards celiac disease /potential celiac disease?

also wouldn't having a postive celiac bloodtest suggest that she is most likely not IgA deficient since being Deficient in IgA antibodies would also result in false negative blood results?

Hi Emma6,

Thank you for pointing that out! I agree with you! Good points! I stand corrected.

She also doesn't need to intentionally re-expose herself to gluten, since she is intelligent enough to realize that it makes her sicker!

If she wants to find out if she may be sensitive to various additional proteins (besides gluten), such as milk proteins, soy proteins, egg proteins, yeast proteins, etc., she can either try Dr. Kenneth Fine's stool sample testing via his lab, or, she could avoid all those proteins, for say a month, and if and when well, she could start re-introducing each of those proteins, one at a time, to see which ones cause problems, or don't cause problems!

Sincerely, Concerned Lady (retired RN/nurse, hubby has non-Celiac gluten sensitivity)

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None of Dr. Fine's work is recognized by any valid medical institution, with good reason.  You cannot test for food intolerance's through stool testing.  The only valid testing they do is gene testing for Celiac because that's well established testing and everyone's doing it. Trying to test for Celiac or NCGI through Enterolab is a complete waste of money.

Also, having an IgA deficiency does not mean your immune system is not functioning properly. It just means you do not make enough of the IgA antibody so Celiac testing for that class of antibodies cannot be used.  That is why they use an IgG panel also.

Good grief, people! Start reading books on Celiac written by valid medical professionals, not internet based doctors who spout ridiculous ideas about cross reactivity and stool testing that isn't recognized by anyone. Maybe in future testing will become easier and much more accurate than it is now but stool testing is not a valid test protocol for anything related to Celiac. It can show malabsorption, which is an indicator of a GI problem, but that's about it.  

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Hi Gemini,

My birthday is in June, so I'm a Gemini too---and I do agree with some of your good points. 

I had written that one could EITHER try Dr. Fine's stool sample testing, where his EnteroLab looks for elevated numbers of IgA antibodies to various food proteins (gluten, milk proteins, soy proteins, yeast proteins, etc.), OR one could just avoid eating or drinking or touching suspect food proteins, for at least a month (3 months is better), and see whether AVOIDING eating and touching such proteins causes improvement or not, in one's symptoms and lab test results.

I urge you (and anyone else who wonders about this) to speak by phone, with people working at Dr. Fine's EnteroLab,  and state your objections to them, and see what their replies might be. Here's their phone number: 972-686-6869.

I called Dr. Fine's Enterolab, and the folks I spoke with there, were nice enough to reply to any questions that I had, including one lady (I believe she was a nurse) there telling me about the "IgA deficiency" blood test called "total secretory IgA", which one can do first, to see whether it pays to try EnteroLab's stool sample testing!

From what I understand, Dr. Fine doesn't try to distinguish between Celiac and non-Celiac forms of gluten "sensitivity". This is because although Celiac Disease is VERY serious, it is the "tip of the gluten-sensitive iceberg", meaning, that higher percentages of gluten-sensitive folks are NON-Celiac gluten-sensitive folks, who can also have major health problems, but the non-Celiac folks have "villi" that are sub-microscopically damaged, and thus, this sub-microscopic villi damage cannot be seen under the microscope--but it's there!

And, Dr. Fine's point, is that in both Celiac and non-Celiac types of gluten sensitivity, the cure is the same: AVOID GLUTEN!

Dr. Fine doesn't use the term "gluten intolerance", because newer uses of the word "intolerance" refers to NON-PROTEIN intolerances, such as "lactose/milk sugar intolerance" (lactose/milk sugar is a carbohydrate, not a protein), and intolerances are not related to one's immune system, while gluten "sensitivity" and other "sensitivities" ARE related to one's immune system, with ingestion (eating or drinking the offending proteins) causing one's immune system to cause the production of antibodies to those proteins that one is "sensitive" to.

Many years ago, a friend of my husband, went to a local doc who told my husband's friend to try avoiding gluten. My husband's friend, without being biopsied, went off gluten, and has become well, ever since that day long ago.

Some years ago, both my husband and I did Dr. Fine's "EnteroLab" stool sample testing, for gluten sensitivity. My husband came out positive, and I came out negative. My husband has avoided gluten, ever since then, and I try to do so also, to avoid tempting him to cheat, and he has avoided getting colds, etc., the way he used to, before he stopped eating glutenous foods.

And, there is much disagreement (I know, because I'm a retired nurse, and I've been a patient now and then) between doctors, about gluten sensitivity, and about anything medical.

So, I've learned to be wary of the terms "valid medical institutions" and "valid medical professionals". What may seem valid today, might be disproved tomorrow, and what might not seem valid today, may be shown to be valid tomorrow. Medicine is always in flux, thankfully. If not, medicine would be "dogma".

If you call and speak with Dr. Kenneth Fine (M.D., gastroenterologist, "sensitive" to many food proteins himself, including gluten, but not "Celiac") &/or to the folks working at his Enterolab, please let us know what their replies are, to your objections to his lab's work.

In the meantime, let's both try to keep an open mind.

Sincerely, Carol Sidofsky (wife of gluten-sensitive non-Celiac hubby, and I'm a retired RN/nurse)

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12 minutes ago, concernedlady said:

Hi Gemini,

My birthday is in June, so I'm a Gemini too---and I do agree with some of your good points. 

I had written that one could EITHER try Dr. Fine's stool sample testing, where his EnteroLab looks for elevated numbers of IgA antibodies to various food proteins (gluten, milk proteins, soy proteins, yeast proteins, etc.), OR one could just avoid eating or drinking or touching suspect food proteins, for at least a month (3 months is better), and see whether AVOIDING eating and touching such proteins causes improvement or not, in one's symptoms and lab test results.

I urge you (and anyone else who wonders about this) to speak by phone, with people working at Dr. Fine's EnteroLab,  and state your objections to them, and see what their replies might be. Here's their phone number: 972-686-6869.

I called Dr. Fine's Enterolab, and the folks I spoke with there, were nice enough to reply to any questions that I had, including one lady (I believe she was a nurse) there telling me about the "IgA deficiency" blood test called "total secretory IgA", which one can do first, to see whether it pays to try EnteroLab's stool sample testing!

From what I understand, Dr. Fine doesn't try to distinguish between Celiac and non-Celiac forms of gluten "sensitivity". This is because although Celiac Disease is VERY serious, it is the "tip of the gluten-sensitive iceberg", meaning, that higher percentages of gluten-sensitive folks are NON-Celiac gluten-sensitive folks, who can also have major health problems, but the non-Celiac folks have "villi" that are sub-microscopically damaged, and thus, this sub-microscopic villi damage cannot be seen under the microscope--but it's there!

And, Dr. Fine's point, is that in both Celiac and non-Celiac types of gluten sensitivity, the cure is the same: AVOID GLUTEN!

Dr. Fine doesn't use the term "gluten intolerance", because newer uses of the word "intolerance" refers to NON-PROTEIN intolerances, such as "lactose/milk sugar intolerance" (lactose/milk sugar is a carbohydrate, not a protein), and intolerances are not related to one's immune system, while gluten "sensitivity" and other "sensitivities" ARE related to one's immune system, with ingestion (eating or drinking the offending proteins) causing one's immune system to cause the production of antibodies to those proteins that one is "sensitive" to.

Many years ago, a friend of my husband, went to a local doc who told my husband's friend to try avoiding gluten. My husband's friend, without being biopsied, went off gluten, and has become well, ever since that day long ago.

Some years ago, both my husband and I did Dr. Fine's "EnteroLab" stool sample testing, for gluten sensitivity. My husband came out positive, and I came out negative. My husband has avoided gluten, ever since then, and I try to do so also, to avoid tempting him to cheat, and he has avoided getting colds, etc., the way he used to, before he stopped eating glutenous foods.

And, there is much disagreement (I know, because I'm a retired nurse, and I've been a patient now and then) between doctors, about gluten sensitivity, and about anything medical.

So, I've learned to be wary of the terms "valid medical institutions" and "valid medical professionals". What may seem valid today, might be disproved tomorrow, and what might not seem valid today, may be shown to be valid tomorrow. Medicine is always in flux, thankfully. If not, medicine would be "dogma".

If you call and speak with Dr. Kenneth Fine (M.D., gastroenterologist, "sensitive" to many food proteins himself, including gluten, but not "Celiac") &/or to the folks working at his Enterolab, please let us know what their replies are, to your objections to his lab's work.

In the meantime, let's both try to keep an open mind.

Sincerely, Carol Sidofsky (wife of gluten-sensitive non-Celiac hubby, and I'm a retired RN/nurse)

That's how he makes his money... of course you will not get them to agree that the tests are bogus! Same with all these " miracle" supplements that claim to " digest" gluten.  If you call them, , of course they are going to say they work!

http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/

"We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support. Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what hasbeen published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease. We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough)."

 

 

Edited by kareng

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From what I understand, Dr. Fine doesn't try to distinguish between Celiac and non-Celiac forms of gluten "sensitivity". This is because although Celiac Disease is VERY serious, it is the "tip of the gluten-sensitive iceberg", meaning, that higher percentages of gluten-sensitive folks are NON-Celiac gluten-sensitive folks, who can also have major health problems, but the non-Celiac folks have "villi" that are sub-microscopically damaged, and thus, this sub-microscopic villi damage cannot be seen under the microscope--but it's there!

So, if this supposed damage cannot be seen under a microscope, how does Dr. Fine state with any amount of credibility that the damage is there?  He also needs to distinguish between NCGI and actual Celiac Disease because there is a huge difference. Regardless of what he claims, it is a well established fact that only in Celiac Disease is there villi damage. I am in no way dismissing the very severe symptoms of some with NCGI or its existence as an illness but people without Celiac do not usually have anemia, malabsorption and the resultant vitamin/mineral deficiencies. Their villi do not curl up and die. If there were damage done to a person with NCGI, then if on biopsy, the doctor hits a sweet spot, they would be able to see the damage under microscopic exam.

I am also in no way defending the mainstream medical establishment because they certainly nearly killed me with their ignorance.  I know no doctor was looking for Celiac 30 years ago when I was sick but I presented with classic Celiac and they still got it wrong. So, I do hear you on that point but in today's world, we do understand Celiac much better and what Dr. Ford comes out with does not match known science. The problem we have is finding a sure fire way of diagnosing people before their guts are totally trashed.  I am sure testing will become much better and more sensitive for people in the early stages of the disease. I have a very open mind on medical issues and my doctor is a functional medicine MD. They have helped me more than most. But if Dr. Fine wants to be taken seriously, he needs to publish his findings for review by others in the medical field. He should be working with the current medical establishment to enlighten them if he has discovered things they haven't. But when he makes statements like the one I quoted, its hard to take him seriously.

BTW....I encourage anyone who becomes ill from eating gluten to be tested for Celiac and if that cannot be proved, then by all means go strictly gluten-free. I know there are people who fall through the cracks but when someone states they need to be gluten-free for health reasons, I believe them!  You don't have to have a diagnosis to want to improve your health with a dietary change.  I am glad your husband has become well on the diet!  That really is the bottom line......

 

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Hi gfpuddin,

I don't think you need to worry too much about other food intolerances yet.  But if you do an elimination diet is a good way to identify them.

You might try reading up on the paleo diet.  It might be a simple way to get started eating whole foods.  You can try Mission brand corn tortillas as a substitute for bread.  If they are too stiff you can rinse them with water and microwave them for 15 seconds to soften.  Quaker makes rice cakes and some flavors are labeled gluten-free.  They are good with a little peanut butter.

Don't be afraid to talk to your family about celiac disease.  It's not a condition that goes away, so you are going to have it a long time.  So they may as well learn something about it.  You got the gene for celiac from one or both of your parents.  So there is a possibility one of your parents might have celiac disease also, or one of their siblings or one of your siblings.

There are also some other conditions that crop up in people with celiac more often than the general population.  See the links below.  So if your family member shave any of these other conditions they may have celiac also.  It doesn't hurt for them to get tested.

http://www.beyondceliac.org/celiac-disease/related-conditions/

http://www.cureceliacdisease.org/faq/what-other-autoimmune-disorders-are-typically-associated-with-those-who-have-celiac-disease/

Your parents need to understand that celiac disease reactions can be triggered by very small amounts of gluten.  Cross contamination of shared toasters, condiments like peanut butter, or even cooking utensils can be a problem.  Storing food in a refrigerator the gluten-free foods should be on the top shelf so it doesn't get contaminated by crumbs falling down from above.

I hope you feel better soon.  It can help your healing if you can cut out all cross contamination.

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I totally agree!!! I had been going back and forth to the doctor for THREE years. After my symptoms started becoming more recognizable after eating, I just knew it was Celiac. My doctor SUCKS! When I explained my symptoms and how I felt after going Gluten Free and why I started back consuming gluten,for the blood test, she was not happy or interested. She even said I didn't need to go back to Gluten for the test to show Celiac. Which is not true. I am looking for a GI now but everyone is booked for months. ?

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