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SMDBill

Member Since 24 Oct 2012
Offline Last Active Dec 10 2012 04:23 AM
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Topics I've Started

Newly Self-Diagnosed - Get Tested! My Story...

07 November 2012 - 05:09 AM

I posted some of this elsewhere, but this is for those newly self-diagnosed or suspecting they have celiac due to improper or incomplete testing by their doctor. I self diagnosed 2 months ago and have been gluten-free ever since. One glutening a couple weeks ago...brutal. I decided to setup an appointment with a gastro and find out just what my situation really is. That appointment was late Monday afternoon and he had me in my procedure (EGD, bone density test, tons of blood work, etc.) the next morning. He wanted accurate test results so since I was gluten-free already he wanted biopsies and other work asap to baseline me and get me on the road to recovery.

I do not yet have the blood work results or bone density information yet. However, many people on the board ask similar questions regarding whether or not an endoscopy will show any signs of celiac if someone is already gluten-free. Short answer is YES! Although I do not know how long the healing time is for the intestine, my endoscopy results, although not back yet for the biopsies, showed visible villi damage in the intestine. I also have stomach lining damage from daily ibuprofen use for the celiac-induced headaches I no longer suffer from since being gluten-free.

If you doubt getting answers, please don't. It is worth the effort to go through all the testing even if you are gluten-free. Perhaps that's not the case for long-term gluten-free people, but if you've only recently gone gluten-free I'd recommend discussing it with your gastro and getting his/her insight into it. Mine happened to be highly experienced with celiac and left no test out of the list so it's important you find the right doc with the right experience and ability to test you properly.

One interesting note: my gastro has been practicing for 35+ years. In his first 15 years he had exactly 2 cases of celiac. He stated that statistically there should only be 400 cases of celiac in the US, but that we actually have between 3-4 million and possibly many more than that. He has gone from one every few years to now diagnosing a new case every 2 weeks. Don't doubt yourself...go get tested. It's worth the time and you may be surprised at what they find and the insight they give you from a medical perspective. I feel blessed to have such a wonderful gastroenterologist and I wish everyone similar luck finding a great doctor to fully diagnose your condition, and more importantly to get all of your vitamin, bone and other issues under control at the same time.

Tested Today!

06 November 2012 - 10:57 AM

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.

Possibly Glutened - How Long Till You See A Reaction?

01 November 2012 - 01:45 PM

I was CC almost 2 weeks ago and just the last couple days I have really started to feel great. We decided to order gluten-free pizza from Ledo's Pizza locally, which I have safely had before. However, it's NOT prepared in a gluten-free kitchen so I knew I was eating it at my own risk.

Anyway, my stomach, within 30 minutes of eating, began loudly growling. I have never had a rash from gluten, but I did have DH on my feet (arches) before going gluten-free. Once I noticed my stomach growling I was joking about it while scratching my hand pretty briskly between the joints of my index and middle finger where they join the hand. (between the visible tendons on top of the hand). I haven't had a rash/itch like that before so I'm not sure if the growling and rash are related and, in particular, gluten related. It's not even been 45 minutes so I have no clue how long it will take if I was glutened before I feel it physically, aside from the rash if it is related.

If you're experienced and know how your body responds, how long till you feel symptoms of it? This sucks...just recovered from one and possibly another today. I know that means a miserable weekend and next week, and it will also guarantee never another pizza unless I make it. Uggggg.

Thanks everyone.

Getting Tested - Need Advice

30 October 2012 - 04:55 PM

So I'm 7 weeks in to being gluten-free and decided I need to get diagnosed officially. My goal is to find out what vitamins or minerals I am deficient in and what strategies the gastro recommends when I get glutened. I read several places that the antibodies tested for will be present up to 6-12 months after being gluten-free. Since I'm in my second month I hope to have sufficient counts, especially since I was glutened a week ago, to show up on the blood tests.

What tests should I make sure I discuss with the gastro? I have a 6 page log of my symptoms before and my condition after being gluten-free. I listed all supplements down to each element and its mg/mcg count that I am taking. I've tried to describe all I was feeling and how things have improved. What else could be important to note or ask? I would appreciate the advice of those who have already walked this path to know what to ask, discuss, etc. that I may not remember or know on my own. My appt is Monday.

Getting Tested For Official Diagnosis

29 October 2012 - 11:37 AM

As mentioned in a few of my posts, I self diagnosed. My symptoms all pointed to it, I went gluten-free and they all (plus some I didn't know were symptoms) disappeared. I got glutened and they all returned. I can tell I'm not absorbing again from the glutening so my iron and other levels are out of whack.

Anyway, appointment made for 5 November with the gastro. I listed 6 pages of info and symptoms to take with me, along with results from going gluten-free and every ingredient of every supplement I take. Praying to get medical diagnosis to have in my record so I can get a full battery of tests for vitamin and nutrient levels. And then I can get official support to have the kids tested.

Fingers crossed! I just got glutened a little over a week ago so my antibodies should be in full swing.