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22 posts in this topic

I have self diagnosed myself as celiac, but I wanted an accurate diagnosis and follow-on plan to know if I have bone, vitamin and other issues that need attention. Yesterday was my first appointment with my gastro and he was wonderful! We went over all my symptoms, including skin condition that I think used to be DH. Since I am now gluten-free he was unable to look at my skin and see signs of celiac, but he probed me with lots of questions and fully agreed that I sound as if I am celiac. It was 5pm last night and he was already setting me up for full celiac panel, bone density test and EGD...all scheduled for today.

The doc wanted to get my tests run asap since I'm already gluten free. He concurred that gluten-free was the right thing for me and he wanted every test run to baseline the disease for me and document all my levels. This morning I called his cell phone and he had already arranged the EGD, bone density test and all the blood work (taken during IV insertion before the EGD). I went into the EGD hoping he'd find something that would provide evidence of damage. Boy was I in for a surprise.

The EGD showed signs of damage in my stomach and intestine. He took 6 biopsies, all from spots he showed me were already inflamed and damaged. He diagnosed part of the problem as duodenitis. In my stomach he identified a problem as erosive gastritis, most likely the result of long-term ibuprofen use (daily headaches for years due to celiac). He prescribed medication to help with the inflamation and infection. From the pictures he took in my stomach and intestine, he is pleased he got valuable information and headed off more serious problems in the process.

I won't know anything concrete until Wednesday next week, but he is certain it will all point to celiac from the test results. He already believes all the symptoms do so now it's a matter of putting it all together and planning a path to better health by fixing any deficiencies in proteins, vitamins/minerals, thyroid issues, liver enzymes or whatever else could come back abnormal. With a family history (5 generations) of hypothyroidism or hyperthyroidism I'm a bit worried, but I have not displayed symptoms of either yet. All of this testing will also identify thyroid issues that I may not be aware of, but for now I have fingers crossed that it's normal.

I'll post back once I have official information from the tests and whatever plan we work out for me to follow beyond my current supplements and gluten-free diet. The stomach issues are a bit worrying, but I caused those myself so I know who to blame :)

Thank you to everyone on the gluten-free forum! What a great place to come, discuss issues, help others and learn so much.

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While I am sad to hear you have visible damage - I am very glad to hear that you now have confirmation of everything you suspected and more. It will make your follow-up endo much more interesting to have this baseline to compare it to.

As for the familial thyroid history - you may have stopped this cycle as many with both thyroid conditions and celiac improve gluten-free - some are able to reduce their hormone replacement and some are able to stop them all together over time. That you haven't gotten to the point of needing them yet is a very good thing indeed - but still very important to monitor as they do often stroll together.

Keep up the great work and thanks for sharing the update :)

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I'm glad the doctor is working with you. It sounds like a very positive appointmet... in spite of the gut damage... that's no good. :(

I wanted to add that I'm one who was diagnosed as hypothyroid after finding out I had celiac. I actually had suspected a decade or so ago but the tests (TSH) kept coming back at a high normal or just above... which the doctors called fine. :rolleyes: I was hypo back then because I feel no different than I do today... Anyways, when you get the thyroid tests run, request a TSH, TPO Ab, and free T4 and free T3 if they'll let you. All those tests together will give a MUCH clearer picture of what your thyroid is doing. With you family history, I hope they would agree to a few extra tests. :)

Best wishes.

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Thank you both! I'm very pleased that they had not only suspicions of celiac, just like I had, but also were able to even have visual evidence of more than just celiac. The ibuprofen damage is worrying, but now that the headaches are gone I don't take it any longer. Most worrisome for me are my 4 children needing to be tested and the ramifications if any of them do have it.

My fingers are crossed on the thyroid end. I know I'm easily susceptible to hypo or hyperthyroidism due to the 5 generations that have had it, but I'm praying the gluten-free will help get that under control, if needed, without further medical needs. I saw what they went through and it was very difficult for my mom to function at all many days.

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Hi Bill,

The doc sounds lke a good one. The autoimune thyroid disease associated with celiac is called Hashimoto's Thyroiditis. With so many generations of your family having thyroid issues there is definitley somethig going on. Either all of them are iodine deficient for some reason or they are suffering from a common problem. Like celiac related Hashitmoto's Thyroiditis. Hashimoto's Thyroiditis is when your body makes antibodies that attack the thyroid gland. The thyroid gland is a butterfly shaped gland that is centered at the front of your throat near the Adam's apple, (the butterfly body) and the wings extend back on both sides of the throat.

The autoimmune attack can kind of wax and wane so symptoms are not constant. People can have both hyper and hypo thyroid symptoms with Hashi's. Sometimes they have throat swelling or throat irritation or soreness too. The TPO antibodies are a test for Hashimoto's.

Really they should test everybody with Hashimto's Thyroiditis for celiac diseas, but that doesn't always happen. A family history like yours is something your doctor should be made aware of. Repeated problems like that are a big red flag for the medical people to look into things.

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Thanks GFinDC! I told him about the history of thyroid issues. My mom was diagnosed with Grave's Disease and she had a goiter that was very large. It eventually went back down without surgery, but her treatment for thyroid issues lasted 5 years. I do not know the extent of the others' issues in my family other than their diagnosis, but your suspicions may be very accurate. My mother has also had digestive issues that she attributed to problems with leafy vegetables, particularly cabbage, but I suspect more was going on that was not properly diagnosed. She is on a daily regimen of fiber and seems to be doing ok on it, but she avoids some foods that trigger a response. I may ask her about the possibility of being tested for celiac now that you mention Hashimoto's.

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NP Bill. My mother had Grave's disease too. They killed off her thyroid with radioactive iodine. She used to get red in the face, have a fast pulse, and even got irritable. Which was very unlike her. Other posters have reported their throats swelling on one side or the other, and the swelled area feeling warm or hot to the touch, In my mother's case it was too late, and she developed thyroid cancer. I have a cyst on my thyroid, but it is not cancerous. Tell Mom to get tested, it is so easy to get a blood test after all.

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Follow up information. I got my blood test results and bone density results. Every single test was normal. Every vitamin and nutrient level, thyroid, liver enzymes, proteins...everything they tested my blood for was normal except triglycerides were high normal (which is WAY better than it used to be!). The bone density test was normal. So...all I have left to find out is the result of the biopsies to both intesine and stomach. Because of the erosive gastritis and duodenitis he took samples in both places, but that'll be another few days before I know the rest of the story.

Good to go so far but he encouraged me to continue on every supplement I currently take and stick to gluten-free diet indefinitely. The only thing left is to get the biopsy results and find out if he's treating the H pylori with antibiotics.

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Hi

Sounds like a good doctor. We seem to be following a similar path. My bloods came back normal, if low normal. My biopsy was normal, though I have a small hernia. Luckily a doctor told me to quit ibuprofen years ago because of my stomach problems (now, I wonder what could have been doing that for 20 plus years??)

My new GI covered the we can't confirm celiac speech, BUT acknowledged that was likely because I was gluten-free for testing, referred me to a dietitian, took blood for genetic testing and totally supported my gluten-free diet.

He also said my son had enough symptoms to justify testing.

I took in a list of questions and he is going to write to me with answers with my genetic results.

Feeling very lucky right now.

Hope your next steps are good

Mw

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Well, today I called the Dr. and got to speak with his nurse. I was concerned about H pylori he thought he found in my stomach. The biopsies all came back negative for the infection, negative for celiac. He took many biopsies in my intestine and quite a few in my stomach as well. Nothing was positive so I ended up with a diagnosis of duodenitis and erosive gastritis, but no medical proof of celiac. All blood work and bone density came back normal. Even my cholesterol has dropped. So I'm not missing any vitamins/minerals, bones are fine, no celiac found through 6 biopsies. Nothing other than my symptom improvement since going gluten-free has pointed to celiac.

My wife asked, "So do you not have celiac?" I can't help but believe I still do because I had DH bumps on both feet that disappeared after gluten-free, my skin issues cleared, my headaches are gone, my energy is back, my sinuses no longer run, my stools are darker again. From what I've read intolerance doesn't lead to all the same symptoms as celiac, though they do mirror in many of them. I hope someone here with intolerance can shed some light on it or maybe confirm the changes I've gone through could or could not be intolerance rather than celiac.

Confused :(

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Hey Bill-

You are not alone in your confusion. The plain truth is there has not been enough research into NCGI - period. The symptoms are often identical to those in Celiac Disease with the exception of antibodies. Paul (GFinDC) is posting on this thread and if I'm remembering correctly he has a few links to the most recent NCGI papers - if not I'll try to find them.

Given your improvements in a short time of removing gluten and the strong reaction to minor glutening - I'd say there is no doubt that you need to remain completely gluten-free.

I'm sure others will chime in, but I'll check back later today to see how the conversation proceeds.

It really is a very good thing if you do not yet have major damage to your villi - frustrating, but good.

Hang in there :)

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I have also heard (read) on here, that those with DH are less likely to test positive on an endoscopy biopsy. That's part of the reason some with DH or suspected DH try to get that diagnosed instead, though even that can be difficult. I agree with Lisa.

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Ooops, ratted out by the Leessur!

This is probably an article you've seen already Bill. I've read also that people with DH tend to not have as severe GI symptoms as other celiacs. They may develop them later tho.

This article is about a couple conditions that do react to wheat, but are not celiac disease. They can't test for these conditions with celiac disease testing, don't worky. I am not saying you don't have celiac based on flunking tests tho, we know the tests are not perfect and the results depend on having gluten in the diet. So being gluten-lite or gluten free before testing is never a good idea.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

A small part:

//

Of the 920 participants, 276 (30%) suffered wheat sensitivity symptoms, became Anemia, weight loss and history of food allergy in infancy. Wheat sensitive patients also tended to have more coexistent atopic diseases.

From this study, we know that non-celiac wheat sensitivity exists. Further studies will explore the distinction between the celiac-like and allergy-like types of the condition.

///

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Thanks Paul!

Bill- I completely agree - negative tests do not rule out Celiac Disease - especially in cases of DH.

One remaining test would be if you get accidentally glutened and have a DH outbreak you could have that biopsied. Those with DH on the forum give great advice in that area.

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Thank you all. Several things are troubling after getting such "normal" results. Gluten free cleared 21 symptoms that I was able to document. When I say I had DH, that's an assumption based on what my skin in the arches of my feet looked like pre-gluten-free. They appeared as dard red/brown blisters very deep in the skin. They itched badly, mostly when I removed my shoes or bathed. They were identical on both feet and within 4 days completely disappeared after being gluten-free. I also had very rough elbows and a bit of psoriasis on my scalp. Those cleared at the same time.

I haven't found documentation where sensitivity/intolerance leads to those kinds of conditions and correction after gluten-free. I don't doubt it exists and I'll keep looking, but what I'm actually thankful for is healthy villi and no headaches.

Here's a situation and question: When I was not yet gluten-free and my pains were at their worst, my stools were very lightly colored and very loose all the time. When I went gluten-free I immediately also started to supplement. I noticed within a few days that my stools turned a greenish color, which is normal for iron to do. When I was glutened that coloring changed again back to a much lighter color and my urine was also not the bright yellow it normally turns from the strong B-complex I take. When the pain subsided, the coloring to my urine and stool returned. I never stopped supplementing along the way. So my question is, if it's not celiac, why would I not have been absorbing those nutrients properly during that time period? I've now been free of gluten since that one time several weeks ago (4-5 I think) and my stool and urine coloring is back to green/bright yellow. Does that provide a true indication of absorption? It seems to me as though it points right to a lack of absorption but I guess the only way to know is to wait until I am glutened again and watch for it.

I don't care which I have in the end, but it would be nice to know what to call it. My doc did not call back yesterday so for now I'm still in the dark. The nurse said all my tests are clear and perfect, and there were many, so I'm extremely thankful that I just have to manage this. I have called it celiac due to symptoms and indications when glutened plus my recovery and changes to my body. I may be wrong so it would help if I knew for sure. Either way the fix is the same so it's almost semantics at this point, but if it is celiac I have a lot more concern about monitoring with my physician than if it's a sensitivity since celiac causes damage and can have far worse long term effects.

Thanks for all the inputs! I really appreciate the concern and insight. When I had self diagnosed it was easy because gluten-free gave me my answer, but after all this testing it makes me feel as though maybe I was wrong. I'll ask the doctor what his diagnosis is but if he bases it on testing it'll likely be sensitivity. Maybe that's all it is and I'm not as bad off as I thought. But I sure would love a regular piece of pizza and some homemade rolls!!!!! haha (No, I wouldn't do that to myself!)

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Good Morning Bill-

A couple thoughts:

I tthink I am remembering correctly that you had removed gluten for several weeks prior too both blood and biopsy. It is possible this was enough time to bring all blood levels within normal range.

Your doctor noted inflammation in the small intestine during the endo - have you seen the path report yet? Stage 1 and 2 are not specific to Celiac, but together with your dietary response sure indicate Celiac Disease.

Did you have genetic testing. Genes alone aren't a basis for diagnosis, but are another piece of the puzzle.

As for follow up - another endo at a year gluten-free to check for healing of the noted inflammatory conditions would be wise. Periodic nutrient testing with either celiac disease or NCGI also seems like a good idea. For you I would add DGPs to those nutritional tests.

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Lisa,

I had been gluten-free for 8-10 weeks before the blood work and endo. What he saw during the scope was duodenitis and erosive gastritis. The biopsies came back negative for H pylori infection and negative for celiac. I do not have the results and I only got that info from the biopsies from his nurse. He was supposed to call me back yesterday to discuss the results but he never called. I'll try again today.

My dietary response was quite remarkable to being gluten-free. No more oily stools, loose bowels, clear skin, no headaches (except from the Prilosec OTC he had me take for 2 weeks to help the erosive gastritis!), more energy, regular bowel movements (not 5-8 per day like before), better muscle feeling, less gas and bloating, and a few other positive improvements. Whether celiac or intolerance, my body improved enough to let me know something was deeply wrong and removing gluten fixed it.

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I agree - you are not alone being either/or. My kids test negative. One has an "official" dx, one calls himself celiac and one calls himself intolerant. All three live better lives gluten-free.

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My blood and biopsy were both negative, but I had been gluten free or light beforehand.

I am still calling myself celiac. I am happy to explain in more detail if anyone asks. I am quite happy to say that the tests dont work if you can't eat gluten.

I have also now seen a GI who fully supports my decision to be gluten-free. He has referred me to a nutritionist. He also gave me advice on getting my kids tested, and did a genetic test. He discussed NCGI.

I was disappointed if not surprised when my tests were negative.

But I knew my response to the diet told me what I really needed to know.

I was feeling so much better, and hadn't been glutened for ages, and started to question it all. 'Luckily' I got glutened at the weekend, so I am convinced now.

The lack of damage to the villi is good news, honestly.

Good luck, it'll be interesting to see how we both get on next x

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HI Bill,

The study about non-celiac wheat sensitivity was just published in Jul-2012. We really don't have any more knowledge about it yet to say what the effects of it are, or how it progresses etc. How it affects other parts of the body etc are totally unknown at this point. Some of the patients in the study made IgA or IgG and some didn't show any. What it all means is not clear yet. Perhaps some of these people are pre-celiac and would develop celiac disease in time, we don't know.

Some had reactions they identified as allergic.

It's a bit of a situation for sure. People try the gluten-free diet and find they feel better. But then they want testing to confirm but they are already gluten-free and the tests don't work. Or they may have one of these 2 newly identified conditions but there is no standard test protocol for them. But at least their doctors can tell them they have IBS and give them some anti-depressants. :(

We still don't have the old Star Trek tricorder available in medicine. You could do your own testing tho. Staying gluten-free for 3 to 6 months and then doing a gluten challenge would be a good test. Maybe eat pizza and drink beer for a week or 2 and see if it causes symptoms to return.

http://www.ncbi.nlm.nih.gov/pubmed/22825366

//

Patients with WS alone were characterized by clinical features very similar to those found in celiac disease patients. Patients with multiple food sensitivity were characterized by clinical features similar to those found in allergic patients.CONCLUSIONS:Our data confirm the existence of non-celiac WS as a distinct clinical condition. We also suggest the existence of two distinct populations of subjects with WS: one with characteristics more similar to celiac disease and the other with characteristics pointing to food allergy.Am J Gastroenterol advance online publication, 24 July 2012; doi:10.1038/ajg.2012.236.

///

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We still don't have the old Star Trek tricorder available in medicine.

Please include a new food synthesizer when you send the requisition for your tricorder to Star Fleet Command - ours is currently malfunctioning - all of it's products have trace amounts of gluten -- it is my understanding that the new model, called a Replicator, has been programmed to never allow replication of these harmful proteins ;)

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Please include a new food synthesizer when you send the requisition for your tricorder to Star Fleet Command - ours is currently malfunctioning - all of it's products have trace amounts of gluten -- it is my understanding that the new model, called a Replicator, has been programmed to never allow replication of these harmful proteins ;)

May as well wait a while, I hear the replicaters are on back order too. Except for the ones at Star Gate command, they have more than enough! I'm sure you could get one there cheap! :)

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