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Alyssa16

HELP (it has been a loooong 5 years)

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Hey there everybody. I was hoping to get see if anyone had any similar story to what's been going on. Sorry for the long post.

The end of 2011, I got very sick with a sinus infection that turned into pneumonia and was put on methylprednisolone. I had a horrible reaction to it. It felt like I was being stabbed all over with a needle randomly. I've got sicker and sicker since then. We always said it was a systematic thing because I would roll through alternating symptoms involving all different parts of my body. In the end of 2012, my primary Doctor ran a celiac panel and it came back with positive markers. Gliadin IgA and tTg IgA were normal. Gliadin IgG came back as 88 and tTg IgG was 113 when they both should have been under 15. The gastroenterologist said the biopsy came back normal. For the next three years things got horrible. We saw every doctor we could. I was throwing up every meal I ate between 10-30 minutes. I finally at the beginning of 2015 being at my wits end, saw a very well respected holistic Doctor who took blood and stool tests and told me I absolutely had celiac disease. I've been gluten-free for a year and a half and have been much better. I'm no longer throwing up but I'm still having pretty horrible symptoms. For insurance reasons and the fact that I'm 18 with a supposed life long disease, I would really like to have a MD diagnose it. I saw a gastroenterologist last week who says it's slightly possible the biopsy was wrong but he wants to leave it at non-celiac gluten sensitivity.  He says the markers that were positive basically indicate nothing and they don't use those. Why would I of been referred to a gastroenterologist and gone through that then? Why does the medical community even use them? So many things made sense with the celiac diagnosis but I have multiple doctors who don't was to put that label on it.  I've seen two gastroenterologists, gynecologist, two ENTs, a urologist, two allergists, a neurologist (several years). I've had every test done, so many blood tests, been in the ER, was in the hospital for 4 days. Here are some of my main symptoms over the years (only about half still remain).

SEVERE period cramps, throwing up all meals, heartburn/GERD, frequent urination, stabbing pains, ulcers, SEVERE fatigue, hives, bloating, multiple drug allergies, multiple food allergies, sleeping problems, nausea, hard time focusing, skin rashes, stomach pain after eating, migraines, sinus infections on a monthly basis, ear pain, itchy ears, dandruff, itchy skin, losing hair easily, bone pain, general malaise.

I'm 18 and am exhausted if I'm out of the house for two hours. This started when I was 13. I missed my entire high school years. I really need to get this figured out and move on with my life. Any help would be much appreciated.

 Much thanks, 

Alyssa

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50 minutes ago, Alyssa16 said:

Hey there everybody. I was hoping to get see if anyone had any similar story to what's been going on. Sorry for the long post.

The end of 2011, I got very sick with a sinus infection that turned into pneumonia and was put on methylprednisolone. I had a horrible reaction to it. It felt like I was being stabbed all over with a needle randomly. I've got sicker and sicker since then. We always said it was a systematic thing because I would roll through alternating symptoms involving all different parts of my body. In the end of 2012, my primary Doctor ran a celiac panel and it came back with positive markers. Gliadin IgA and tTg IgA were normal. Gliadin IgG came back as 88 and tTg IgG was 113 when they both should have been under 15. The gastroenterologist said the biopsy came back normal. For the next three years things got horrible. We saw every doctor we could. I was throwing up every meal I ate between 10-30 minutes. I finally at the beginning of 2015 being at my wits end, saw a very well respected holistic Doctor who took blood and stool tests and told me I absolutely had celiac disease. I've been gluten-free for a year and a half and have been much better. I'm no longer throwing up but I'm still having pretty horrible symptoms. For insurance reasons and the fact that I'm 18 with a supposed life long disease, I would really like to have a MD diagnose it. I saw a gastroenterologist last week who says it's slightly possible the biopsy was wrong but he wants to leave it at non-celiac gluten sensitivity.  He says the markers that were positive basically indicate nothing and they don't use those. Why would I of been referred to a gastroenterologist and gone through that then? Why does the medical community even use them? So many things made sense with the celiac diagnosis but I have multiple doctors who don't was to put that label on it.  I've seen two gastroenterologists, gynecologist, two ENTs, a urologist, two allergists, a neurologist (several years). I've had every test done, so many blood tests, been in the ER, was in the hospital for 4 days. Here are some of my main symptoms over the years (only about half still remain).

SEVERE period cramps, throwing up all meals, heartburn/GERD, frequent urination, stabbing pains, ulcers, SEVERE fatigue, hives, bloating, multiple drug allergies, multiple food allergies, sleeping problems, nausea, hard time focusing, skin rashes, stomach pain after eating, migraines, sinus infections on a monthly basis, ear pain, itchy ears, dandruff, itchy skin, losing hair easily, bone pain, general malaise.

I'm 18 and am exhausted if I'm out of the house for two hours. This started when I was 13. I missed my entire high school years. I really need to get this figured out and move on with my life. Any help would be much appreciated.

 Much thanks, 

Alyssa

Welcome!  I'm glad to hear that you are doing better on the gluten free diet.  Perhaps, you have other issues, or maybe you just need to make sure you are not getting any hidden gluten into your diet.  Do you eat out?  Live with gluten eaters?  Eat processed gluten free food?  

I understand the need for a formal diagnosis.  Here is some information about a gluten challenge.  Keep in mind, that you would have to eat gluten daily for 8 to 12 weeks.  All celiac testing requires a person to be on a gluten diet (less for an endoscopy).  It is very important that you be under a doctor's care during the challenge.  

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 

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Thanks for the replies.

I'm sure I've been tested for everything the past couple years but I guess I should be tested again. I am currently taking xifaxan to normalize any overgrowth of bacteria in the gut. 

My entire house is gluten free. I eat out maybe once or twice a week at very safe restaurants. I read all the labels of the gluten free food. Definitely not getting any hidden gluten. This gastroenterologist didn't even mention testing for celiac again. I'm slightly worried after reading several stories of gut healing taking several years and if eating gluten again would make the last year and a half meaningless. 

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I am concerned that you are not getting any follow-up care regarding celiac disease or Non-celiac gluten Intolerance.  You had elevated antibodies.   I understand that your biopsy was negative, but at the very least you should get retested for diet compliance and to check for any deficiencies.  I do!  

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

You can't really go by symptoms to determine if you have been glutened or not.  I was just anemic when I was diagnosed.  Only a blood test could tell me if I were anemic again unless I let it go a long time and I get out of breath, but that's scary severe.  When I was glutened last summer, my symptoms were so severe.  So different from when I was diagnosed.  My GI thought I had SIBO, but my DGP tests revealed.....a glutening.  

I am also concerned that you think you are eating out twice a week at safe restaurants.  What does that mean?  Are those restaurants run by celiacs? Are they 100% gluten free?  Even though they may have a gluten-free menu, you are still risking a gluten hit.  People make mistakes.  Cross contamination happens.  Again, best to get re-tested.  Those DGP numbers should be close to zero after a year and a half of being gluten free.  

Take care!  

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Gliadin was replaced by Deamidated Gliadin (DGP) as a test roughly 10 years ago. tTg IgA  is still a useful test. Your GI may not even be aware of this. My first one was not. 

Non celiac gluten sensitivity does not present with positive antibodies, at least per Fasso at Mass General. 

I have been through mountains of tests too and still going. I feel for you. 

Eating out...did that too, mistake. I am not sure what set off my last episode of D where I could hardly function tor 2 weeks but I am suspicious over a flavored vinegar I bought from a specialty shop. 

Doctors are only so useful in my eyes and very often are destructive by pretending to have a clue by acting so sure about something they really have an elementary understanding of. Once you accumulate a mountain of tests and ER visits they dismiss you. They also get dismissive when they cannot figure out what is wrong with you. It is extra important that you find one who has a clue about celiac and even then, they may miss the boat. You really need a celiac specialist who understands the latest research, how the disease can present, how it can effect other parts of the body. 

I recently mentioned head pressure to my GI doc. I had gotten this badly after my last episode. My celiac sibling (positive biopsy) gets this too and saw a naturopath who informed him that in some celiacs the inflammation travels to the brain. I can tell you this totally makes sense to me. It is a symptom that came on during an episode and diminished over weeks. When I told this to my doc he informed me celiac patients generally "just get the runs".  Well, I had that too for 24 hours, lol. But "the runs" is cake compared to the other symptoms. He actually said this to me in a follow up phone call as well.  Now, I thought, well, why would he know? Who goes to a GI about neuro issues? The head thing is a weird example, but his statement was telling. He has no idea how the disease can effect folks. 

Have the correct bloodwork drawn again. It may be negative because you are gluten-free but you never know. If you are still sick to your stomach, get another endoscopy. I could never survive another gluten challenge, it screwed me up the first time enough. So if you cannot resume gluten for another endo, do the endo anyway. It may or may not show damage. 

Fyi, i had mildly positive bloodwork and an endo which was normal last winter. 7 months later I had moderate positive bloodwork and inflammation in my intestines but no damaged villi. The latter 7 months was on a gluten-free diet but going out to eat. I am headed to an actual specialist next month. 

Did you get genetic testing?

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Usually I'm using apps to tell me what celiacs have thought about the restaurants in the area and repeatedly eating at a few different places I haven't gotten sick. Now that I think about it, gluten was a definite possibility. I ,however, just got all negative results from all the following tests so I'm guessing I'm doing ok on that front.

-Basic metabolic panel

-Liver enzyme panel

-CBC

-Serum IgA

-Tissue transglutaminase(tTG), IgA

-Tissue transglutaminase(tTG), IgG

-Thyroxine(T4), free direct serum

-Thyroid stimulating hormone

I thought the same thing about positive antibodies and non-celiac sensitivity reading this;

http://www.cureceliacdisease.org/faq/is-ttg-elevated-in-persons-with-non-celiac-gluten-sensitivity/

l'm seeing his nurse practioner in two weeks so I'm going to take this and basically argue with what he said and see how that goes haha. I'm gonna guess not real well. I'm going to push being tested for other autoimmune diseases in addition. http://www.cureceliacdisease.org/faq/if-i-have-a-positive-blood-test-and-a-negative-biopsy-does-that-mean-i-have-gluten-sensitivity/

 

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are your new negative results with or without a gluten challenge?

i think its irresponsible for your doctors to dismiss positive bloodwork. i agree that positive blood results points towards at least potential celiac disease and there is a good chance that there either wasn't enough damage yet or they missed it. pretty sure high Gliadin IgG means you were having an immune response to gluten. ttg IgG is less specific/sensitive than Iga but nonetheless it is an antibody related to tissue damage in the small bowel.


seems common for GIs to deem celiac blood work as unreliable and then glaze over the fact that biopsy results can also be unreliable.


if you have/are doing a gluten challenge i would ask for an EMA bloodtest and DGP not just ttg. if not maybe get the genetic test?

 

 

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Great that he ran the TTG IGG again, but what about the DGP IGG?  That should be run again too as that was elevated orginally too -- they could still be elevated from a glutening.  Many doctors think that the DGP test is actually better for dietary compliance.  Google it!  

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These blood tests were without eating gluten. I'm going to talk to them about genetic and DGP testing. There are several health conditions that are linked to celiac throughout several members of my family. It just makes sense. What I don't get is he basically disregarded those test results. Is it pretty common for those to be elevated in those with gluten sensitivity? From what I've heard, it doesn't do any damage to your body so why would the IgG(s) be 5 times the normal level(s). I just don't want to be less strict down the road with gluten free, thinking it's not damaging my body and end up with cancer in 10 years because whoops we misdiagnosed you. I'm miserable and would like to discuss individual issues with a doctor who knows celiac (like every other disease has) but can't find one who knows more than a single textbook page of knowledge. I can't imagine what this was like 30 years ago.

Thank you guys so much for taking time to help me. It's quite possibly keeping me sane at the moment to have people who validate my concerns. :)

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There is not test for non celiac gluten sensitivity. That would not cause your numbers to be elevated.

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Where do you live? I was going to go to Cleveland but just got an appointment with Celiac Center in Boston. 5 hour drive next month. Hoping it is worth the trip.

Might be worth looking into.  

I just educated a lab on DGP yesterday. They just brought a celiac panel in house and i saw they were using gliadin. I think they are running my sample on the old test in-house and sending it out for DGP to see what happens. 

 

 

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On 10/26/2016 at 10:13 PM, Alyssa16 said:

These blood tests were without eating gluten. I'm going to talk to them about genetic and DGP testing. There are several health conditions that are linked to celiac throughout several members of my family. It just makes sense. What I don't get is he basically disregarded those test results. Is it pretty common for those to be elevated in those with gluten sensitivity? From what I've heard, it doesn't do any damage to your body so why would the IgG(s) be 5 times the normal level(s). I just don't want to be less strict down the road with gluten free, thinking it's not damaging my body and end up with cancer in 10 years because whoops we misdiagnosed you. I'm miserable and would like to discuss individual issues with a doctor who knows celiac (like every other disease has) but can't find one who knows more than a single textbook page of knowledge. I can't imagine what this was like 30 years ago.

Thank you guys so much for taking time to help me. It's quite possibly keeping me sane at the moment to have people who validate my concerns. :)

Hi Alyssa.......well let me tell you what it was like 30 years ago!  It went from "we don't even recognize or look for Celiac" then, to "we know about the existence of Celiac but we have no clue how to test for or read a Celiac panel" today. How is it we have much better knowledge and publicity about Celiac Disease yet there are many docs who act like it's a new word for them? 

Using IgG testing, along with IgA, is necessary because there are those people with an IgA deficiency. IgG is the most common antibody so may give information when not enough IgA is present to test.  With your symptoms and infection history, it sounds like you do have Celiac but need a better doctor to help you with that. If you do decide to stay gluten free, then you have to tighten up your diet and not go out to eat until all your symptoms resolve and your blood work is low end negative. You are way too young to be this sick and you sound just like I did 30 years ago. I was diagnosed via blood work only because all the numbers on the panel were well over 10x the normal limit.

Are you anemic?  Maybe add that and a vitamin panel to the blood work list to see if you have deficiencies?  Not having them does not rule it out, especially when you are very young. You may not have gone long enough to develop them yet.  Whatever you decide, I wish you the best of luck in finding a good doctor!

 

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So when I saw them today, they really did not want to diagnose celiac. They again said medical science is not perfect and the main strain they like to see isn't there. The positive antibiotics could be a fluke. They said it was "inconclusive". They don't see any issues not diagnosing. Gluten makes you sick therefore don't eat it. They want me to see a gynecologist for the periods, see a rheumatologist, and diagnose me with IBS. They want to treat all the symptoms seperately yet AGAIN instead of finding the cause. Pretty sure IBS doesn't give you stabbing nerve pain all over. Just saying. Pretty much done with these people after they asked if I considered taking a week and going to Mayo Clinic since they treat challenging cases aka we don't know what to do with you. I'm in Austin and don't have any decent doctors in the state that I've been able to search for. Sigh.

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1 hour ago, Alyssa16 said:

So when I saw them today, they really did not want to diagnose celiac. They again said medical science is not perfect and the main strain they like to see isn't there. The positive antibiotics could be a fluke. They said it was "inconclusive". They don't see any issues not diagnosing. Gluten makes you sick therefore don't eat it. They want me to see a gynecologist for the periods, see a rheumatologist, and diagnose me with IBS. They want to treat all the symptoms seperately yet AGAIN instead of finding the cause. Pretty sure IBS doesn't give you stabbing nerve pain all over. Just saying. Pretty much done with these people after they asked if I considered taking a week and going to Mayo Clinic since they treat challenging cases aka we don't know what to do with you. I'm in Austin and don't have any decent doctors in the state that I've been able to search for. Sigh.

Alyssa16,

This is to follow up on what you said about the doctor's finding the results inconclusive.

This quote is from the article by the Dr. Hoggan the author of Dangerous Grains about how a "biopsy" proven Celiac diagnosis came to be.

Quoting Dr. Hoggan "Perhaps he missed all the twists and turns that researchers have experienced on their way to choosing villous atrophy as the defining characteristic of celiac disease? He may not realize that the "gold standard" intestinal biopsy was a retrofit added to the diagnostic criteria for celiac disease to counter the widespread resistance to Dr. Dicke's claim that dietary gluten was the cause of celiac disease. Gastroenterologists simply wouldn't believe that gluten could cause celiac disease without some rigorous testing that ultimately excluded many of the folks who were previously diagnosable with this ailment, many of whom died from it. So the diagnostic criteria began with a constellation of gut symptoms, then it relied on an intestinal biopsy showing damage that was reversed by a gluten free diet. Now, those who have the same symptoms, which also respond to a gluten free diet, and who might previously been diagnosed with celiac disease, are now thought to have non-celiac gluten sensitivity."

Here is the link http://www.celiac.com/articles/24551/1/A-Review-of-The-Gluten-Lie---And-Other-Myths-About-What-You-Eat-by-Alan-Levinovitz-PhD/Page1.html

It was very informative to me to see how "biopsy proven" came to be and why people like Gemini and myself are sometimes only Serology (blood test) confirmed.

Like Ironictruth said in her post " I (you probably) could never survive another gluten challenge, it screwed me/you up the first time enough."

And from my quote when the "gold standard" of biopsy proven Celiac disease was established people "many of whom died from it" before GI patients received a Celiac diagnosis.

For my money Serology confirmation is "golden" or as Dr. Mark Hyman says in this HuffPost blog now 5+ year old quoting  http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

"Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant.

We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems."

 

And I admit change is hard -- any change really but we have to admit it before more people die that a Positive blood test is a Positive indication of as the good doctors says "a continuum of disease" and we need to realize it before it too late.

Because as Dr. Hoggan say's continuing his citation "The rude dismissal of Dr. Dickie's ideas by American gastroenterologists, signals a dynamic in science that was originally outlined by Thomas S. Kuhn, which Dr. Levinovitz seems to have overlooked. Kuhn's book, The Structure of Scientific Revolutions (7) outlines the process by which scientific revolutions take place. To oversimplify and paraphrase the process, it begins with scientists (doctors) in that field ignoring the new idea. Then, as it gains credence, the scientists laugh at it. With gaining momentum, the new idea is vigorously opposed. Finally, once widespread acceptance has been gained, the scientists give the impression that they had known this all along."

It is a new way of thinking relatively  that a blood panel is enough to diagnosis a Celiac alone but it is an idea who's time has come in my mind.  It sure would save a lot of pain and suffering by many patients and if Dr. Hoggan's citation about early diagnostic tests for Celiac's up to and including a "biopsy proven" Celiac diagnosis is true that even people died why trying to get the "gold standard" of proof possibly many people's life as well.

If you are having trouble still with Chronic Fatigue then see this thread about Magnesium Citrate it will really help your energy levels.

New research by Columbia University explains well why some people get false positives and why blood work and biopsy proven celiac disease often rarely match up in a patient.  It explains the "continuum of disease" Dr. Hyman realized 5 years ago that many doctor's still don't understand.

See this thread that talks about it in detail I think it explains what you are experiencing with your doctors very well and

Why it is common sometimes to get "false positives" as blood work is sometime styled (and you have experienced) in the absence of Celiac "proven biopsy".

You can skim down to the end of the thread to save time for now and see my summary of the new research but I recommend reading the whole 13 posts when you get the time.

I hope this is helpful.

Posterboy,

 

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