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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Input On Pathology Report
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So, I finally got a copy of my pathology report. I'm going to include all of my tests from this year so that it is all in one place. To recap my previous posts, my Dr. isn't giving me a diagnosis. He is stopping just short of saying "you have..." They are currently treating me as though I have crohn's even though I don't entirely fit into that category. Looking up even mild cases, I don't nearly go to the bathroom that much. Anyway, as far as I know I am down to either crohn's or celiac as the culprit. One of you had mentioned the possibility of another problem, but I'll have to go back and find what that was (and which of you said that. Sorry, can't remember off the top of my head who).

Please let me know your opinions. Even if you think there might be another problem to throw into the mix.

August 20

Pathology report

Diagnosis

A: Duodenum, biopsy

1. small bowel mucosa without diagnostic abnormality

2. no histologic evidence of celiac disease or other enteropathy

B: Ileum, terminal, biopsy

1. nonspecific chronic active ileitis

2. no dysplasia or malignancy

C: Colon, random, biopsy

1. colonic mucosa with no diagnostic abnormalities

2. no evidence of active inflammatory bowel disease

3. no dysplasia

Comments

B: The biopsy shows a chronic ileitis without specific features, differential considerations include medication induced injury versus crohn's disease. The findings include a patchy distribution of inflammation, mild active inflammation, focal aphthous ulceration, mild crypt distortion, no pyloric metaplasia and no granulomatous inflammation.

Specimen/Gross description

Duodenum, biopsy:

A) Received are 4 pink-tan soft tissues averaging 2mm. Entirely submitted in toto in a single cassette.

Terminal, ileum, biopsy:

B) Received are 4 pink-tan soft tissues ranging from 2 to 3mm. Tissue is submitted in toto in a single cassette.

Colon, random, biopsy:

C) Received are multiple (approximately 8) tan-pink soft tissues averaging 2mm. Entirely submitted in toto in 1 cassette.

September 24

Pillcam Endoscopy Report

Procedure info & findings

There are multiple aphthous ulcers scattered throughout the small intestine, a few larger than other.

Summary & recommendations

This is a complete test. There are multiple aphthous ulcers scattered throughout the small intestine, a few larger than others. The findings are suspicious for crohn's disease, although if the patient has been taking NSAIDS, NSAID enteropathy remains a possibility.

June 26

Lactose Breath test

Normal

July 5

Immunoglobulin A, Qn, Serum Result 235 Unit mg/dl Range 80-450

October 10

Sedimentation Rate-Westergren Result 9 Unit mm/hr Range <20

April 23

Basic Metabolic Panel

sodium Result 130 Range 135-145

potassium Result 4.0 Range 3.5-5.0

chloride Result 105 Range 98-107

co2, total Result 25 Range 23-31

anion gap Result 9 Range 5-18

glucose Result 83 Range 65-100

calcium Result 9.3 Range 8.5-10.5

bun Result 9 Range 8-25

creatine Result 0.78 Range 0.57-1.11

bun/creat ration Result 12 Range 10-20

GFR if not african american Result >60 Range >60

IGA tissue transglutaminase AB Result <1.2 Standard range <4

June 1

C-reactive protein, quant Result <2.0 Range <5

TSH Result 3.87 Range 0.30-5.00

Hemoglobin Result 13.8 Range 12.0-16.0

Hematocrit Result 41.3 Range 33.0-51.0

MCV Result 96 Range 80-100

MCHC Result 33.4 Range 32.0-36.0

MCH Result 32.0 Range 26.0-34.0

RDW Result 13.9 Range 11.5-15.5

platelets Result 315 Range 140-440

neutrophils Results 46 Range 42-72

lymphs Results 45 Range 20-44

monocytes Results 4 Range 0-11

eos Results 2 Range 0-7

basos Results 1 Range <3

neutrophils (absolute) Results 2.2 Range 1.7-7.0

lymphs (absolute) Results 2.1 Range 0.9-2.9

monocytes (absolute) Results 0.2 Range <0.9

eos (absolute) Results 0.1 Range <0.5

basos (absolute) Results 0.0 Range <0.3

RBC Results 4.31 Range 4.00-5.20

WBC Results 4.8 Range 4.5-11.0

That is everything, I think. My Lymphs came back high by a little bit. I don't really use NSAIDs, so the damage to my small intestines is not from that. I do take percocet and get epidural cortisone shots (no more than three shots in a year). I don't think either of those would do anything because percocet has acetaminaphine, and I haven't found anything linking the shots to intestinal problems. I am anxious to hear input from anyone to help give me a little direction. I am gluten free now, and am in the process of buying secondary kitchen items for myself since we have a compromised kitchen. I am treating gluten as though I have celiac and am pretty sensitive. I found out after an icky stomach that the godiva hot chocolate I was drinking was cross-contaminated in its processing. I though I had a dairy issue, but after going one month without it there was no change at all. My previous, and shorter, dairy free trial period may have coincided with allergies. I do know that I can't have large servings of dairy, because I will have problems from that. No more "american size" portions for me. ha ha.

Thanks to all for your thoughts. I know this is really long and I appreciate you taking the time to look.

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Hi Megan!

I went back to check your previous post because I couldn't remember your story.

How long have you been gluten-free now? Any improvement in symptoms?

Did you end up taking meds for Crohn's?

Is the list above everything you were tested for? There are no celiac antibody blood tests listed. Only Total Serum IgA - this is meaningless without further celiac specific tests. These tests should have been done before you removed gluten - but still remain important if you haven't had them. Edit after I re-read - you did have one celiac test tTG-IgA.

Your Thyroid Stimulating Hormone (TSH) is in "normal" range, but is on the high side of normal. The TSH is actually a pituitary hormone test, I suggest requesting thyroid tests of Free T3, Free T4 and Thyroid antibody blood tests.

I can't remember your symptoms, have you had an ANA? This test will not indicate a specific autoimmune disease, but can indicate that there is a possibility of AIs. Depending on symptoms maybe add RF - Rheumatoid Factor.

So I'd add:

tTG-IgA and IgG

EMA - IgA

DGP - IgA and IgG

Thyroid - Free T3, T4 and thyroid antibodies

ANA

RF

Some others may have other suggestions.

Oh...any nutrient testing?

Add: Bs, D, K, Iron, Ferritin, Copper, Zinc

Hope that's not overwhelming - I'm all too familiar with endless "normal" blood results ;)

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Lisa gives great advice! I was going to say much of the same (although she made more suggestions than I thought of) but I was going to add my own story about the TSH. I have had hypothyroid symptoms for 15 years. My TSH was always on the high side of normal; I just did not realize how common that is in Hashimoto's patients. If the doctors had run the other thyroid tests that Lisa mentioned, I would have been treated and probably felt much better in my 20's and 30's.

Most hypothyroid patients do not feel better unless their TSH is well below a 2; a 1 is usually cited as very good. Google hypothyroid symptoms and treatments and see if any of it appears to apply to you. Many celiac symptoms overlap with thyroid problems.

Good luck and best wishes. :)

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Lisa and Nicole,

Thanks for your suggestions. I have not had any nutrient testing, but I will be requesting these at my next appointment. I have been gluten free since early September, but I have had many mistakes along the way and quite a few cc's. So, I have had a few good strong weeks. I do feel a little better, not as many upset stomachs or severe cramps. I am not familiar with an ANA, and not sure if it would do any good since I already have an AI disease, Hashimoto's.

I have had my thyroid out and am completely dependant on meds. My levels were just checked again, but I didn't have them in front of me when posting. They did go back down in the 2's. My endocrinologist used to impress me with his willingness to work based on my symptoms and numbers. Now he seems content with me in the 2's even though I don't feel well at that level. Like you said, Nicole, I felt my best when I was around 1. After adding cytomel, he seemed fine with a higher number. I just switched back to synthroid only, and I am absolutely sure my dose is too low right now. I forgot how miserable this feels, and there is nothing I can do about it except wait for my next test tomorrow and hope the results are enough for him to up my dose. bleh!

Since I don't think I ever really gave my story, just some questions here and there, I can give you a quick recap. For the last few years I have felt a little off. It wasn't until a year ago I really had the feeling that there was an underlying issue with my weight and inability to lose it or at least this feeling I had around my midsection. Just one of the feelings that you can't explain or shake off. It just nags away. This year I went to a nutritionist for some guidance. All I really wanted was to feel better. Weight loss would be a bonus. With her help I realized I had a problem with gluten. I went to my doctor to ask for celiac testing, and she ran one celiac test and a metabolic panel. My test was negative, but when I asked her if there were more tests we could do or what else we could look at and explained my worsened symptoms during the heavy gluten loading she had me do, she diagnosed me with celiac based on my symptoms and sent me on my way. No info. No advice. Just kind of gave me the feeling that she diagnosed me because she thought I want to have it. So, after feeling unsatisfied I finally sought a second opinion from a GI doc. He would run a round of tests, find no answers, have me come in, and order more tests. They have not ruled anything out, nor have they given any diagnosis. All I have found for sure is that I have ulcers and inflammation in my small intestine. On the one hand, that sucks that there is damage. On the other, I'm releaved to have proof that I'm not being a hypochondriac. Now, I just feel lost. They are treating without saying that they are treating the right thing. All I want is to get better and feel good. It has been so long that I don't remember what it feels like anymore.

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You have documented damage in the small intestine. ( Did you get any picutes from the pill cam?)

Remember, I am not a doctor.

I feel the signs of a food/protein are showing up in your results. There is damage, but it is not out of the normal ranges. The eos, eosinophil count, is higher in the specific area tested. (In adults diagnoses is done by the elevated count range)

It seems you have identified gluten as an intolerance. (doctor's will feel very comfortable with taking just your word for "official" intolerance diagnoses for that.) You may have to do an elimination diet to identify other food intolerances.

The damage in yoursmall intestine is now a primary concern for your nutrient levels. Pernicious anemia is caused by the gut lining lacking the intrinsic factor to absorb vitamin B12. This then leads to severe anemia. The average American is shown to be lacking vitamin B12. (One episode of Mystery Diagnoses did show the patient having "D" and stomach pains as the primary symptoms. I was in fact swearing up and down it had to be Celiac, which they finally said testing was negative for in the last few minutes before the diagnoses.)

I didn't see any testing with a negative result for H. Ployri.

At this point, Stay off gluten, keep a food journal, ask for more clarification of your test reaults from your doctors, ask for a list of all disorders they have ruled out, any more tests that could be done, and prepare for an elimination diet to determine your food intolerances. (you may want to do this after the holdiays. I'm not going to tell you it is easy. All top 8 allergens eliminated from your diet instantly seems very limiting. I would think you should get any further testing done to make sure a diagnosable disorder isn't causing the inablility to eat some of these foods.

Like the connection betwwen Celiacs not having the enzyme associated with papaya. (sorry I am having a really bad brain fart and can't think of the proper way to explain this or the name of the specific enzyme I'm talking about.

Hope some of this helps.

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Lisa and Nicole,

Thanks for your suggestions. I have not had any nutrient testing, but I will be requesting these at my next appointment. I have been gluten free since early September, but I have had many mistakes along the way and quite a few cc's. So, I have had a few good strong weeks. I do feel a little better, not as many upset stomachs or severe cramps. I am not familiar with an ANA, and not sure if it would do any good since I already have an AI disease, Hashimoto's.

I have had my thyroid out and am completely dependant on meds. My levels were just checked again, but I didn't have them in front of me when posting. They did go back down in the 2's. My endocrinologist used to impress me with his willingness to work based on my symptoms and numbers. Now he seems content with me in the 2's even though I don't feel well at that level. Like you said, Nicole, I felt my best when I was around 1. After adding cytomel, he seemed fine with a higher number. I just switched back to synthroid only, and I am absolutely sure my dose is too low right now. I forgot how miserable this feels, and there is nothing I can do about it except wait for my next test tomorrow and hope the results are enough for him to up my dose. bleh!

Since I don't think I ever really gave my story, just some questions here and there, I can give you a quick recap. For the last few years I have felt a little off. It wasn't until a year ago I really had the feeling that there was an underlying issue with my weight and inability to lose it or at least this feeling I had around my midsection. Just one of the feelings that you can't explain or shake off. It just nags away. This year I went to a nutritionist for some guidance. All I really wanted was to feel better. Weight loss would be a bonus. With her help I realized I had a problem with gluten. I went to my doctor to ask for celiac testing, and she ran one celiac test and a metabolic panel. My test was negative, but when I asked her if there were more tests we could do or what else we could look at and explained my worsened symptoms during the heavy gluten loading she had me do, she diagnosed me with celiac based on my symptoms and sent me on my way. No info. No advice. Just kind of gave me the feeling that she diagnosed me because she thought I want to have it. So, after feeling unsatisfied I finally sought a second opinion from a GI doc. He would run a round of tests, find no answers, have me come in, and order more tests. They have not ruled anything out, nor have they given any diagnosis. All I have found for sure is that I have ulcers and inflammation in my small intestine. On the one hand, that sucks that there is damage. On the other, I'm releaved to have proof that I'm not being a hypochondriac. Now, I just feel lost. They are treating without saying that they are treating the right thing. All I want is to get better and feel good. It has been so long that I don't remember what it feels like anymore.

You're right, Hashimoto's can cause a positive ANA too. A bunch of the AI disorders do. I would look at getting your thyroid levels to a good spot for you. As you know hypo symptoms match many celiac symptoms (and others) and could be making it more difficult to diagnose your problem. My thyroid is not being well treated yet so I still don't feel really well even though I'm gluten-free, but like you, my GI symptoms are better now.

Many of the AI disorders cause some stomach issues too, but I don't know about the damage. Crohns, colitis, and celiac and the ones I've heard about that cause damage. Celiac damage is usually in the duodenum and not the illieum. Casein in milk can cause villi blunting too.

If I had to guess, with zero medical training, on what's wrong (from what you've told us) I would guess you have celiac (one of the 25% who does not show up in blood tests) or non-celiac gluten intolerance. It looks like your celiac hit further down than most people's though... It could be infection of some sort. Could be Crohns. Could be milk allergies. With those issues, if you have NCGI, if you cut out gluten you will have some improvement of symptoms but not all since there could be other issues at work. It sounds like you are low on free T4 and T3 too so that will affect you too.

I think you've got a mixed bag that's going to take a while to sort out. :( I would stay gluten-free since the gluten-free diet doesn't start to feel good for many for a few months. I personally didn't feel better for a month or so. I would work at getting your thyroid meds in line... I know that takes a while (I was diagnosed hypo this summer and I am no where near being happy with my meds yet).

I wish I could offer you help. I'm not educated in this so I can't be of much use. Good luck... let us know how it's coming along, okay?

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Hi Megan,

Have you tried eliminating common food intolerances like dairy and soy? Niightshades are another big one. Some people aere trying nettle tea to help with inflammation, it might be worth a try.

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Hi, I noticed that your sodium is below range...was that addressed? have you looked up symptoms of low sodium?

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You have documented damage in the small intestine. ( Did you get any picutes from the pill cam?)

Remember, I am not a doctor.

I feel the signs of a food/protein are showing up in your results. There is damage, but it is not out of the normal ranges. The eos, eosinophil count, is higher in the specific area tested. (In adults diagnoses is done by the elevated count range)

It seems you have identified gluten as an intolerance. (doctor's will feel very comfortable with taking just your word for "official" intolerance diagnoses for that.) You may have to do an elimination diet to identify other food intolerances.

The damage in yoursmall intestine is now a primary concern for your nutrient levels. Pernicious anemia is caused by the gut lining lacking the intrinsic factor to absorb vitamin B12. This then leads to severe anemia. The average American is shown to be lacking vitamin B12. (One episode of Mystery Diagnoses did show the patient having "D" and stomach pains as the primary symptoms. I was in fact swearing up and down it had to be Celiac, which they finally said testing was negative for in the last few minutes before the diagnoses.)

I didn't see any testing with a negative result for H. Ployri.

At this point, Stay off gluten, keep a food journal, ask for more clarification of your test reaults from your doctors, ask for a list of all disorders they have ruled out, any more tests that could be done, and prepare for an elimination diet to determine your food intolerances. (you may want to do this after the holdiays. I'm not going to tell you it is easy. All top 8 allergens eliminated from your diet instantly seems very limiting. I would think you should get any further testing done to make sure a diagnosable disorder isn't causing the inablility to eat some of these foods.

Like the connection betwwen Celiacs not having the enzyme associated with papaya. (sorry I am having a really bad brain fart and can't think of the proper way to explain this or the name of the specific enzyme I'm talking about.

Hope some of this helps.

Ahh.. good old brain farts. I love those. Mine tend to happen at the most inopportune time. I know exactly what I'm going to say, and the *poof* it's gone right when it should be coming out of my mouth. Meanwhile I feel like people are looking at me thinking I just shouldn't be talking. :)

I do have pictures from my pillcam. I don't know how to post them, though. There doesn't seem to be a lot in the pictures until the ileum. Those two were harder to see because the camera caught up to the "sediment" which is hard to see through. The damage isn't horrible, so I caught it before it got real far.

My results never showed anything on H. pylori which is surprising. I would have thought that they automatically tested for it in this situation. I will have to ask about that along with getting nutrient testing. I also have to convince the doc to check copper and ceruloplasmin, since I am feeling a bit concerned about my pancreas as of late. There is a mild pain and discomfort behind my stomach that radiates to my back. There was one night it was so bad that I almost went to the ER on my lunch break, but I figured I was overreacting to my back pain. I have herniated discs that cause a lot of problems, but this pain was just below that. Anyhow, it isn't bad. Just sort of there and noticeable. I'm keeping an eye on it for now. The doc should be happy with me when I go into my appointment with a list of tests I want done and questions I want answered. I don't care though.

I have multiple issues at play- trying to get my thyroid hormones back on track, and figure out what foods I am having issues with. First thing after the holidays I will be starting an elimination diet. I need to know. As hard as that will be, it is worth it. It has been a miserable year healthwise for me. One thing after another. And if the thyroid and GI problems weren't enough, I found a breast lump that I now have to monitor for a couple more months. I'm sure it's nothing, except annoying. Just one more thing to throw into the mix. Aaarrgh! :angry:

Thanks everyone for all the advise. I am taking notes and preparing for the next step.

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You are right to have your pancreas checked. I would just reading (light skimming tease article) about the pancreas and how some some very early signs are some things I tend to take for granted because of Celiac. Fat malabsorbtion and weight loss.

A breast lump could be a normal reaction to too much caffiene. They never seem to put that information out there. I had found a breast lump when I was about 27. Totally freaked out, because nobody talked about some breast lumps that are not cancer.

I am wishing you positive healing thoughts!

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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
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