Neg Blood, Symptoms 15 Yrs, What Should I Do?

[Alizarin]

Hi all,

I'm new to the site and to the world of food issues, but I've had horrible stomach/intestine burning pain after eating on and off for about 15 years. At times, it has made me vomit (rarely - I have a strong stomach for nausea), and once there was blood (scared me to death!). Usually, though, an attack will simply leave me in searing pain for 8-16 hours at a time. It began to happen when I was about 10 years old, and happened every month or two since then. My parents and pediatrician said it was just "stress" or "hormones" and that I would "grow out of it". They were wrong. Symptoms continued to worsen throughout high school and college, and after finishing grad school I was unable to eat anything at all. I lived on Dark Chocolate Ensure (fun to go to Rite Aid and buy cases of that as a 23-yr old), and generally had diarrhea within about 15 minutes of drinking it. I was unemployed and without my own insurance at the time, but I lost almost 30 lbs (much of it bloating, I think - I looked swollen all over) in about 3 months, and my parents finally took me to a Gastroenterologist.

I went through several fasting lipid panels which determined that I had slightly higher cholesterol but nothing else, and I don't remember anyone saying anything about allergies or celiac at the time. I had an endoscopy that surveryed my esophagus, stomach, duodenum, and the top of my small intestine, and found that all were raw, red, and very inflamed. I had a biopsy, but only for H.Pylori, which came back negative. I was told that I had GERD (despite the fact that the burning was mostly beneath my belly button, and not under my chest), and maybe IBS too. I was handled a prescription for 4 months of 40mg Omeprazole, told to eat more grains and less meat, and left to deal with it.

I went home and ate some whole wheat toast, but that immediately hurt, so I decided not to eat bread for a while and grew tired of feeling ill after Ensure, so I ate a lot of yogurt, froyo, fresh fruits, and rice. I ate maybe two small meals per day, and gradually felt better. I gained some weight back, and then I came down with mono (good luck, right?) and didn't eat much besides beef broth, organic ice cream (just sugar, egg, milk, cream, raspberry/coffee), and occasional pieces of very soft white baguette. Cream of wheat violently disagreed with me. I was still eating wheat obviously, but less than I used to, and when I finally got better, I had a blood test to see if I was back to normal. This time, I was checked for iron deficiency anemia, and I had it. I was already on birth control for years, and I still had (and have) periods of 5+ days, with 3-4 heavy days. I was told to get a bottle of Feosol and report back in a year. I was also told I have Reynaud's syndrome, since my nails turn blue and my feet/hands get really cold and turn white for no reason that I can see.

At my first job, I tended to eat all manner of starchy crap because I wasn't making so much, and it was commonly left out. For the next two years, I was gassy, bloated, constipated, always feeling full, still anemic, and very, very tired all the time.

I still didn't really think anything of food allergies until I stumbled onto the Paleo diet, tried it, and felt really good, digestively speaking. Then I started to notice that when I ate breads, oatmeal, beer, etc, I got that signature burn at a low level in my gut. If I kept eating it, the burn would get stronger. So, I did what anyone would probably do if they didn't know about testing for Celiac - I quit eating gluten most days, and most other grain products too. Now and then I'd have some, and once I did a little "test" to see what would happen if I ate a lot. I swelled up, looked pregnant, started passing undigested food, and had constant nausea and discomfort. I also became increasingly depressed, with wild mood swings and anxiety that resolved upon eating meat and vegetables with no grain.

After about a year of this on/off gluten-free diet, fast-forward to today. I finally did some research on intolerance, Celiac, and allergies. Even though I am between jobs and don't have great insurance, I decided to test for food allergies. This was right after my dentist told me I had bone loss and minor gum disease, even though I barely eat sugar and I consume lots of calcium - oh, and I'm 25 years old. About 2 weeks prior to testing, I tried to eat more wheat products - a slice of toast here, a cup of tortellini there, and since my stomach was uncomfortable, I figured this would be good enough.

I got positive on soy and corn allergies via the skin prick test, but negative on wheat allergy. I immediately dropped the soy and corn (which explains the immediate reactions to Ensure several years ago, I guess!) from my diet, and requested the Celiac blood panel. They said I had eaten enough wheat to get a meaningful result. I was called a few days ago with a negative result, and told "everything is normal." I asked for a paper copy of the test, but so far have not received one. They told me "if you don't feel good when you eat wheat, just don't eat it." I'm not eager to do a gluten challenge and re-test (plus biopsies are pricey!!!). But given the downsides of having undiagnosed Celiac and continuing to eat gluten occasionally or accidentally, I'm a little afraid to just leave it at that.

The strange part of the whole thing is that I got definite hits on two substances I sort of thought I might be sensitive to, but nothing at all for the one substance associated with all my worst bouts with gastritis - in fact, I once had a bout of nausea and severe burning that kept me in bed for almost 2 days straight in college, after eating only a dish of whole wheat pasta and a light shaving of Parmesan cheese (which I've eaten by itself before and had no issues with) due to an empty fridge situation. I just find it really confusing that the thing that obviously (to me) is a big contributor to my 15 years of debilitating stomach episodes apparently hasn't left a trace - and I'm worried that it's my fault for going very gluten-lite before getting tested.

So what would you do? Genetic testing to see if it's a problem and go from there? I don't feel taken seriously by the medical establishment, or by anyone else. Even my boyfriend asked if I wanted it to be Celiac. Of course I don't! I just want to feel confident that I don't have something serious so that I can eat what makes me feel good and get on with my life

Thank you in advance for your way-more-informed opinions!!!!!

[ravenwoodglass]

Celiac is autoimmune rather than an allergy and doesn't show up on allergy tests. If you really feel that you need a definate diagnosis then you do need to load up on gluten for about 3 months and you may still have false negative on tests.

It seems like your body is clearly telling you that gluten is the enemy. Whether you want to consume it for the length of time you need for testing is a question only you can answer. I know it is hard when we don't have a doctor telling us that yes we have celiac but there are quite a few members here who are self diagnosed. You do sound like one of us. Ask any more questions you need to and read as much as you can here.

[Alizarin]

Celiac is autoimmune rather than an allergy and doesn't show up on allergy tests. If you really feel that you need a definate diagnosis then you do need to load up on gluten for about 3 months and you may still have false negative on tests.

It seems like your body is clearly telling you that gluten is the enemy. Whether you want to consume it for the length of time you need for testing is a question only you can answer. I know it is hard when we don't have a doctor telling us that yes we have celiac but there are quite a few members here who are self diagnosed. You do sound like one of us. Ask any more questions you need to and read as much as you can here.

Thank you so much for your reply, ravenwoodglass! I'm really on the fence about doing the challenge, and I think I will definitely start with the gene test since that doesn't depend on present gluten intake. The only thing that makes me think I might benefit from doing a challenge and re-testing (plus biopsy) is that I've been in a false-negative situation before:

When I came down with mono three years ago, which lost me 10 lbs. (at 112 lbs to start with) and 2 months of my life, I initially had negative blood results for that, too. I was sick for about a week and a half before ending up in the ER with dehydration. My boyfriend, who was sick with the same symptom progression, had just been diagnosed with mono/EBV, so I asked if they could run a test for that. After a CT scan, 6 vials of blood, and 8 hours, the very young ER doctor who saw me said the test was negative and I had nothing to worry about. He prescribed me antibiotics and sent me home. I insisted on a copy of my bloodwork.

I continued to feel miserable and my symptoms worsened, so a week later my parents took me to my childhood pediatrician, who decided to repeat the test for EBV. It came back strongly positive (70 where 15+ means positive).

He looked at my blood tests from the ER, which I brought, and laughed because they told me I had a bacterial infection and gave me antibiotics when my WBC wasn't elevated at all. There was no basis for that diagnosis, and the pills had made me sicker.

After I began to improve, several weeks later, I took a look at the tests and used the web to learn how to read the results for myself. I noticed that all of my RBC counts were at the absolute bottom of the normal range, and I asked my doctor about it. Only then was I referred to a hematologist who discovered and treated my iron deficiency anemia.

So - I have to say, that experience left me a bit skeptical of both test results and the opinions of rushed and busy doctors for whom I am one patient among many.

I am also thinking that perhaps my body is also a bit slow to mount an immune response, since it took 3 weeks of acute illness symptoms before I got a positive mono test (I don't know if the two tests/methodologies are comparable at all). Maybe I am also slow to ramp up a gluten response after increasing ingestion? I don't know. Does anyone else have a similar history of false negatives followed by positives? If so, how long did you wait between tests?

[mushroom]

Hi, Alizaarin. I am one of the self-diagnosed. By the standards we generally consider (notwithstanding what you were told) I do not believe you were eating enough gluten for an accurate result. We usually recommend 3-4 slices of bread per day for a minimum of 2-3 months. Two weeks is just not long enough, even though you were getting occasional gluten here and there previously. So if you are, as you seem to suspect, a person who is slow to ramp up reactions, I believe you would need to do the full challenge t get a valid test result. You would undoubtedly find this a totally miserable experience You have to decide whether it is one you are willing to go through to get a doctor derived diagnosis, or if you can trust yourself to avoid gluten without a diagnosis.

I have never had any testing for celiac, and no testing for any of my other food intolerances. They have all been based on experience and trial and error. My doctors always put a question mark in front of my gluten sensitivity diagnosis, but I know so that doesn't bother me. It does make it hard to get gluten free food in the hospital,, however. Well, I have to admit that itshard even with a diagnosis At any rate, you know yourself better than anyone else, and if you don't think you can adhere to a gluten free diet without the official instruction from a medical professional, then you probably need to do the challenge.

[ravenwoodglass]

Just keep in mind that gene testing is only a part of the picture. Commonly only 2 celiac associated genes are looked for when there may be at least 9 or more. People can have the associated genes and not be celiac and they can be celiac and not have the associated genes. If you do decide to do a challenge make sure you are consuming at least 3 slices of bread a day for at least 2 to 3 months before retesting.

[Alizarin]

Hi, Alizaarin. I am one of the self-diagnosed. By the standards we generally consider (notwithstanding what you were told) I do not believe you were eating enough gluten for an accurate result. We usually recommend 3-4 slices of bread per day for a minimum of 2-3 months. Two weeks is just not long enough, even though you were getting occasional gluten here and there previously. So if you are, as you seem to suspect, a person who is slow to ramp up reactions, I believe you would need to do the full challenge t get a valid test result. You would undoubtedly find this a totally miserable experience You have to decide whether it is one you are willing to go through to get a doctor derived diagnosis, or if you can trust yourself to avoid gluten without a diagnosis.

I have never had any testing for celiac, and no testing for any of my other food intolerances. They have all been based on experience and trial and error. My doctors always put a question mark in front of my gluten sensitivity diagnosis, but I know so that doesn't bother me. It does make it hard to get gluten free food in the hospital,, however. Well, I have to admit that itshard even with a diagnosis At any rate, you know yourself better than anyone else, and if you don't think you can adhere to a gluten free diet without the official instruction from a medical professional, then you probably need to do the challenge.

Thank you for sharing your advice and experience! Although it's miserable, I'm thinking strongly of doing the challenge and re-testing, since I have a family history of several cancers and osteoporosis, and I'm the first one in my family to even consider testing for any food issues at all (my parents think this is all a hoax or something). So, I think I owe it to myself and to any children I ever have to try a little longer to get valid testing in this area. It's less that I don't think I can adhere to a gluten-free diet without the official diagnosis (I'm planning to do so anyway if I get a second negative since, as ravenwoodglass pointed out, my body sure thinks gluten is the enemy), but more that people (both family and docs) will think I'm a nut for doing so and not respect my decision or my needs. I have a high pain tolerance and a strong stomach, so I tend not to show my discomfort as clearly as others may, which possibly makes it harder for people to see that I do have a long-standing issue that needs addressing and support.

I'm not personally convinced that an M.D.'s opinion is tantamount to absolute truth on this issue - far from it. As a historian of science, I am aware of just how arbitrary a lot of modern and earlier medical science is (though I do think properly-done studies are of incalculable value), and how deeply and often theory and results are swayed by political and/or corporate interests. Once an area of knowledge develops an orthodoxy and an ecosystem of products and services dependent on it, it ossifies somewhat, and is slow to consider new information or criteria. It certainly looks like that has happened with Celiac disease. I also know that people can and do make excellent evidence-based decisions about their own health without an establishment backing them up - it sounds like you're one of these people, and I was one of them during the mono episode.

Unfortunately, however, the official opinion is what others respect and take seriously, and it sucks to have to explain my case history all the time

[mushroom]

I'm not personally convinced that an M.D.'s opinion is tantamount to absolute truth on this issue - far from it. As a historian of science, I am aware of just how arbitrary a lot of modern and earlier medical science is (though I do think properly-done studies are of incalculable value), and how deeply and often theory and results are swayed by political and/or corporate interests. Once an area of knowledge develops an orthodoxy and an ecosystem of products and services dependent on it, it ossifies somewhat, and is slow to consider new information or criteria. It certainly looks like that has happened with Celiac disease. I

Dr. Alessio Fasano, the "god" of celiac diagnosis, helped to establish the current orthodox around its diagnosis, and even he has now changed his mind, so there is hope. See here: Open Original Shared Link

I continue butt heads with two competing orthodoxies, the British and the American, because I get half my medical care in New Zealand and the other half in the U.S. (where I have insurance). It seems that each system is determine to reinvent the wheel, repeat all testing, and apply their own particular orthodoxies to treatment. The latest I heard last month: "We don't do that here."

I like your approach. You seem to have though it through very well.

[Alizarin]

Hi all,

Thanks again for your replies and guidance!

Just got my print-out of my test results, so I figured I'd post them for input. Looks like they did 2 tests on me:

Tissue Transglutaminase Antibody, IGA

<3 U/ml

Reference Range:

Negative <5

Equivocal 5-8

Positive >8

Immunuglobulin A [i think this is the Total IgA, but I'm not 100% sure]

207 mg/dL

Reference Range:

81-463

I was told the this particular doctor's office "does not subscribe to IgG testing" so I'm not surprised they didn't do that.

This isn't exactly a shocker since I didn't do an adequate gluten challenge prior to testing, but I thought I'd go ahead and let you guys take a look anyway

Thanks!!

[ravenwoodglass]

Hi all,

Thanks again for your replies and guidance!

Just got my print-out of my test results, so I figured I'd post them for input. Looks like they did 2 tests on me:

Tissue Transglutaminase Antibody, IGA

<3 U/ml

Reference Range:

Negative <5

Equivocal 5-8

Positive >8

Immunuglobulin A [i think this is the Total IgA, but I'm not 100% sure]

207 mg/dL

Reference Range:

81-463

I was told the this particular doctor's office "does not subscribe to IgG testing" so I'm not surprised they didn't do that.

This isn't exactly a shocker since I didn't do an adequate gluten challenge prior to testing, but I thought I'd go ahead and let you guys take a look anyway

Thanks!!

Can you at least get him to run the antigliadin IGA? I think you are correct that the only IgA he did was the total IgA. He really did a very incomplete test. You may want to see if you can change doctors to one that is a bit more knowledgeable about celiac while you are doing your challenge.

[Alizarin]

Have either of you who have responded (or anyone else) tried the Enterolab tests? I am thinking of trying these instead of going to another doctor right away, since apparently testing intestinal matter doesn't require the same level of gluten ingestion as a blood test would to get meaningful results (or so says the website). I am thinking that maybe this would tell me if I am on the right track without trashing my digestive tract all over again...

If you've tried it, how was the experience? Does this sound like a realistic option, or a waste of time? I realize that the official medical community wouldn't accept my results either way from Enterolab, but it would help me to have a fuller picture of what's going on than the doctor's office allows, perhaps.

Since adding gluten back for the purpose of testing, I have noticed once again the reflux, steatorrhea, undigested food, and fatty globules (gross, I know, I'm sorry) that disappeared on the Paleo diet, so I am concerned about the malabsorption repercussions of pursuing official diagnosis. Back on the fence!

Thank you!

[ravenwoodglass]

Have either of you who have responded (or anyone else) tried the Enterolab tests? I am thinking of trying these instead of going to another doctor right away, since apparently testing intestinal matter doesn't require the same level of gluten ingestion as a blood test would to get meaningful results (or so says the website). I am thinking that maybe this would tell me if I am on the right track without trashing my digestive tract all over again...

If you've tried it, how was the experience? Does this sound like a realistic option, or a waste of time? I realize that the official medical community wouldn't accept my results either way from Enterolab, but it would help me to have a fuller picture of what's going on than the doctor's office allows, perhaps.

Since adding gluten back for the purpose of testing, I have noticed once again the reflux, steatorrhea, undigested food, and fatty globules (gross, I know, I'm sorry) that disappeared on the Paleo diet, so I am concerned about the malabsorption repercussions of pursuing official diagnosis. Back on the fence!

Thank you!

If it will make you feel better to see something on paper then go ahead with Enterolab. I didn't use them before diagnosis but got tested for everything other than gluten and got the gene tests. I got the gene tests because my biopsy and blood test diagnosed DD had her genes tested and was told she was falsely diagnosed and never was or would be celiac. That made me curious as to what genes I actually had. Turns out I don't have either of the two most common celiac associated genes either. I am definately diagnosed celiac though and found out that the double copies of the genes I do have are recognized celiac associated genes in other countries.

IMHO your reaction to the challenge is really giving you the answer though.

[Alizarin]

If it will make you feel better to see something on paper then go ahead with Enterolab. I didn't use them before diagnosis but got tested for everything other than gluten and got the gene tests. I got the gene tests because my biopsy and blood test diagnosed DD had her genes tested and was told she was falsely diagnosed and never was or would be celiac. That made me curious as to what genes I actually had. Turns out I don't have either of the two most common celiac associated genes either. I am definately diagnosed celiac though and found out that the double copies of the genes I do have are recognized celiac associated genes in other countries.

IMHO your reaction to the challenge is really giving you the answer though.

Hi there! I've just received my gene test results, so I'm reporting back: I have double copies of HLA-DQ 2,3 (Subtype 2,7).

Does anyone know of studies or have personal experiences to share with this gene profile? Ravenwoodglass, you mentioned different recognized genes in other countries, including yours - is this one of them, do you know?

Thank you all so, so much - you guys on this forum are the absolute best!

[ukdan]

I'm afraid I don't know much about gene testing but by the sound of it you're obviously reacting to gluten and also have been shown to have damage via endoscopy (even if they didn't do the right biopsy). Out of interest what explanation did they give for the inflammation?

[mushroom]

I know little about the genetic testing; Skylark would be the one to respond to this question.

But back to your gluten challenge -- it certainly was not sufficient to get an accurate result. Three to four slices of bread per day or equivalent for 2-3 months is the suggested challenge period, as excruciating as it will probably be if you intend to do it. A result based on less than that cannnot be relied upon. And the genetic result, even if determined to be predisposing to celiac, is just that -- predisposing. It means that celiac cannot be ruled out or in, that you could develop it sometime in your life. While it would appear that that 'sometime' is now, it is not diagnostic. This whole testing scenario drives me insane, which is why I did not get involved in it, just went gluten free and be done with it. Sure, a lot of people think I'm nuts, because I discovered a lot of other intolerances along with it and I am the one who "eats weird", the one who, when presented with a gluten free monu, asks what else is or isn't in the foods. The restaurants seem to think if it's gluten free it must be okay, but nooooo!! -- I want to know about soy and corn and nightshades and if there is a lemon juice marinade or garnish, and whether there are any beans or peas in the dish Yeah, I know, sounds crazy, doesn't it?? Don't eat out much

Anyway, back to your situation: :you are undoubtedly gluten intolerant. Whether or not you are celiac has yet to be determined. If you are celiac you will get a little piece of paper with a diagnosis you can show people so you can say, "I am not crazy, I have this disease and I cannot eat gluten." And you will not eat gluten. If you are gluten intolerant or it cannot be determined if you are celiac, you will not eat gluten and you will not have the piece of paper and people may think you are crazy, or a faddist, or trendy, or "seeking attention." Whatever floats their boat. But either way, you will not eat gluten and you will feel better. You will have an easier time with friends and family with a diagnosis. I have learned that from this forum. It depends entirely whether sticks and stones will break your bones, how important the piece of paper is it you, and whether it is worthwhile making yourself sick for long enough to try to get the diagnosis (bear in mind the testing could still be negative because of the 20% error rate on both blood and biopsy - this is the dirty little secret that the medical profession does not like to advertise ) Also, there is that annoying little factor of non-celiac gluten intolerance, which gives you most of the same symptoms of celiac, but negative test results and supposedly does not damage the intestine (although you do get the malabsorption problems).

So this post probably has not helped you a lot except to let you know that the problem is not cut and dried, the evidence can be murky at best and it is hard to get a celiac diagnosis. Those who get sick, go to a celiac knowledgeable doctor, get tested, have positive results, do not know the half of it. I have just told you the other half. Sorry

I sincerely wish you luck in your quest for a diagnosis and I hope where you end up in this process is a happy place for you. Sometimes we have to learn to make a happy place for ourselves on this continuym. For some of us, feeling better is that happy place

[Skylark]

You don't have double copies of genes. You would be dead. You have one copy each of DQ2 and DQ7. DQ2 is a celiac-associated gene, one kind of DQ7 can be but Enterolab doesn't test in enough detail to know whether you have the celiac kind.

I am self-diagnosed. Like you, I picked up the sensitivity by elimination and I don't tolerate gluten well enough to challenge.

Nobody questions me and I do not divulge any medical information to people other than doctors (or the occasional friend who is asking about gluten for their own health). I say I'm celiac and that's the end of the discussion. I have had THREE different doctors now tell me that celiac blood tests are no good. They all say that since I'm content eating a celiac diet and I have clear reactions to gluten, I should not make myself ill to try to get testing. The fourth was the first doctor I talked to after figuring out gluten was a problem back in 2005. He wrote me anti-EMA and anti-TTG labs if I wanted to challenge but opined that I'm probably celiac based on my medical history. He said it was fine if I wanted to skip the challenge and eat as if I'm celiac. I ate one sandwich, got sick, ripped up the lab slip and never looked back.

[ravenwoodglass]

Hi there! I've just received my gene test results, so I'm reporting back: I have double copies of HLA-DQ 2,3 (Subtype 2,7).

Does anyone know of studies or have personal experiences to share with this gene profile? Ravenwoodglass, you mentioned different recognized genes in other countries, including yours - is this one of them, do you know?

Thank you all so, so much - you guys on this forum are the absolute best!

Hi, I am actually in the US. The only gene I have really researched is mine. I have two DQ9, one from each parent, so I am a double DQ9.

You have one copy of one of the most common celiac associated genes, DQ2 and you have a DQ7. You got the DQ2 from one parent and the DQ7 from the other AFAIK. You will also pass on either the DQ2 or DQ7 to your children although that doesn't mean they will develop celiac.

[Alizarin]

Hi everyone,

Yes, I misspoke; I don't have extra genes in my DNA, lol! Here is what I got from Enterolab:

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 other than by HLA-DQB1*0201, or DQ3 other than by HLA-DQB1*0302). Furthermore, HLA-DQ2 genes other than by HLA-DQB1*0201 can be associated with celiac sprue in rare cases

Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.

*******************

I agree that diagnosis isn't everything, but I might start telling people that I am Celiac even though I don't have a doctor's signature, because I am only one week into a new job and not being able to eat anything offered in meetings, training, or at lunch is already making me feel extremely alienated. There is basically nothing available at company events for people who can't have gluten, corn, or soy, which doesn't bother me that much since I've started bringing my own meals to events anyway, but it really seems to make other people defensive or annoyed. One co-worker even said, "Not to be insensitive, but can you even eat outside your house?" Because this is someone I work next to every day, yes it is kind of a big deal not to have a "respectable" medical explanation. I have no clue why, but people don't respect intolerances around here. Responses range from sucks-to-be-you to I'm-sure-you're-just-being-dramatic.

I wish there were some kind of "dealing with other people" training, or some way of making mealtimes with others not awkward! I don't really want to share medical stuff with the people I work with or don't know well, but I feel unbelievably uncomfortable not explaining myself in the face of strange looks and comments when I decline certain foods (like everyone's cookies and brownies they bring in for the team). So yes, I think just saying that it's Celiac might make people stop asking questions and let it be sooner, and for me that would be a real blessing!

Thank you all for the encouragement and kindness; I feel pretty alone since I don't have any close friends or family that understand this, but it helps to bounce things I don't know what to make of back and forth with this community

[Alizarin]

I'm afraid I don't know much about gene testing but by the sound of it you're obviously reacting to gluten and also have been shown to have damage via endoscopy (even if they didn't do the right biopsy). Out of interest what explanation did they give for the inflammation?

They said "well, we didn't see an ulcer per se, but everything is raw and inflamed from the esophagus on down as far as we went. We're going to say you have GERD." They told me to take a heavy prescription anti-acid, and to eat more whole grains and a "Mediterranean diet" with little meat. Basically, my GI and his staff had no idea what was wrong with me, and he didn't have the balls to tell me so. :/

[mushroom]

They said "well, we didn't see an ulcer per se, but everything is raw and inflamed from the esophagus on down as far as we went. We're going to say you have GERD." They told me to take a heavy prescription anti-acid, and to eat more whole grains and a "Mediterranean diet" with little meat. Basically, my GI and his staff had no idea what was wrong with me, and he didn't have the balls to tell me so. :/

Well, you did get the 'diagnosis' of IBS, which is basically the same thing - I'm Basically Stumped Wandering down the diagnostic endoscopy path you will typically first find inflammation, then increased intraepithelial lymphocytes, then increased crypt hhyperplasia, sometimes the scalloping, then partial villous atrophy, then subtotal villous atrophy, and finally totally flattened villi. Who wants to go that far down the path? Well, the doctors want you to go at least as far as partial villous atrophy, preferably subtotal so they can be 'sure.'

Saying your have GERD, and your actually having GERD are two different things. For many, the GERD completely vanishes when they stop eating gluten

[mushroom]

They said "well, we didn't see an ulcer per se, but everything is raw and inflamed from the esophagus on down as far as we went. We're going to say you have GERD." They told me to take a heavy prescription anti-acid, and to eat more whole grains and a "Mediterranean diet" with little meat. Basically, my GI and his staff had no idea what was wrong with me, and he didn't have the balls to tell me so. :/

Well, you did get the 'diagnosis' of IBS, which is basically the same thing - I'm Basically Stumped Wandering down the diagnostic endoscopy path you will typically first find inflammation, then increased intraepithelial lymphocytes, then increased crypt hyperplasia, sometimes the scalloping, then partial villous atrophy, then subtotal villous atrophy, and finally totally flattened villi. Who wants to go that far down the path? Well, the doctors want you to go at least as far as partial villous atrophy, preferably subtotal so they can be 'sure.'

Saying your have GERD, and your actually having GERD are two different things. For many, the GERD completely vanishes when they stop eating gluten

[Skylark]

Saying you're celiac to shut coworkers up is NOT a situation that requires a doctor's note. Your diet is none of their damn business, nor do they have access to your medical records. You can say what you need to be left in peace. If you're looking to force the issue to get gluten-free food at company events under ADA, that's when you would need a doctor's note.