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Hello friends! I am so confused right now, and could really use some help. My story requires some background info, so forgive me while I try to "get to the point" asap, but give you the background story to understand my situation...

Last November, I was hospitalized for severe abdominal pain. A GI doctor (we'll call him Doctor F.) was called in and I had an upper GI exam (tube down throat, I think that's what it's called...) and a colonoscopy. Both tests showed nothing urgent, and finally a different test showed that my gall bladder was not functioning correctly and it needed to come out. A surgeon was called in and I had my gall bladder removed. I felt much better for a while. Fast forward to 3 weeks ago...

I was in a lot of abdominal pain again, but this time it was a different pain. Every time I ate, my upper abdomen would swell to the point of looking like I was about 5 months pregnant, and would be in terrible pain. My bowels were a mess, and I was going between 'D' and constipation. I was miserable. I went on a liquid diet for a week, but finally got admitted to the hospital when I took a turn for the worse and couldn't even keep down liquids. I spent 3 days in the hospital with doctors trying to figure out why my abdomen was so swollen and I was unable to keep down solids or liquids.

The same GI doctor (Doctor F.) was called in, and he performed another upper GI exam (the tube down my throat). When the test was complete, Dr. F. explained that he did not see any strictures, but that the last time he did an upper GI test on me (in November), the biopsy was borderline positive for celiac disease! I never found out this information, because Dr. F. doesn't take my insurance outside of a hospital stay. Dr. F. sat at my bedside and told me he had taken some biopsies, but my symptoms were typical of celiac disease. I left the hospital with instructions to put myself on a gluten-free and lactose-free diet until the biopsy came back to confirm the celiac disease. Dr. F. also ordered a lactose tolerance blood test, and I had that done last week.

I came home from the hospital and started to research celiac disease online. It was incredible! I broke out into tears as I read the symptom list. I had almost every symptom! I was excited! Finally we figured it out and I have a diagnosis! I have celiac disease!

I went straight to the grocery store and purchased the tools I would need to follow a gluten-free and lactose-free diet. Within 1 day I saw a HUGE improvement! My tummy swelling went down! A few days later my stools returned to normal, my back pain lessened, and my skin stopped being so dry! It may sound silly, but my whole life I have had a "funny looking" tongue. I thought it was just my weird tongue, but it is actually a symptom of celiac disease! (It's described as having the look of "continents.") On about day 2, my tongue started to look normal! At first I was hesitant to go lactose free also, but I noticed that when I do not eat lactose, I have even less gas pressure and swelling. As the days go on I am keeping to my new strict diet, and feeling great.

I even noticed when I would accidentally "get glutened" because my tummy would swell, and the pain and cramping would start all over again. After a family dinner one evening, my mother in law was very sweet and made me a "flourless chocolate cake." It was delicious, but within about 30 mins of eating it, my belly began to swell and the pain started. I asked her to tell me everything in the cake, and explain how she prepared it. Come to find out she had "just used a little butter and flour on the pan!" That was all it took to gluten me! I have had other reactions too, and each time it's over something very minimal. I am learning that I am very sensitive, and even a tiny cross-contamination is enough to send me into a downward spiral. As the days go on, I have been getting better at watching what I eat, reading labels, and filling my home with gluten-free and lactose-free products.

Today I had my appointment with my regular doctor, because all of my test results were finally in and he had all of the reports. My regular doctor admitted that he was no expert, and no GI doctor, but he would do his best to read the results. Every test we went over showed that I was "normal"?!?! The biopsy...normal; the blood test...normal; the lactose tolerance test...normal?!?! I didn't understand... I am gluten and lactose intolerant. I have proof that if I follow a gluten free, lactose free diet, I feel better and my symptoms subside. Even my anxiety and depression is getting better! Heck my back pain is no where near as bad as it used to be! Their is NO WAY that the tests are correct. Right? My doctor said that because I have such a positive result from eating gluten/lactose free, that he is still diagnosing me with celiac disease and lactose intolerance. I just don't understand how those tests can say that I don't have celiac disease? It's so obvious that I DO have it! My doctor said he plans on having me go in for another round of bloodwork next month that is more in-depth to test for celiac disease. He said until then, I should continue to follow the same diet I am on and to change nothing despite the results of the tests.

Has anyone else had this happen to them? It is so frustrating to me; but I know my body, and I don't need some test to tell me what I feel. Before the test results came back, I told myself that I would not care what they said, and that I know the truth... but it's so hard not to be frustrated!

Thank you for reading my very long post...!! I would love to hear from anyone who has a similar story. Were you originally mis-diagnosed? Did they finally get it right, or do you continue to follow a gluten free and/or lactose free diet despite negative test results?

Thanks so much,

Heather


Heather C.

July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

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Boy can I identify with your post. I am a text book firmly diagnosed celiac. I had the blood tests more times than I can count. It took literally 15 years after the worst of the symptoms set in before I was diagnosed because I also show negative on blood tests. Why I don't know but lots of us do. Just listen to your body and by the way the tests for celiac will be negative if you are gluten free. If the tests he is doing are the gene panels do be aware that you can still be celiac even without one of the two most common genes. I am one of the folks that is living proof that you can be celiac and not DQ2 or DQ8. You are diagnosed. Now you can heal and get your life back.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks you so much for your reply! I can't tell you how helpful it is to hear that someone else has been through a similar experience. I had tears in my eyes as I read the part where you say "you are diagnosed. Now you can heal..." And thanks for the warning that other tests may not come up positive either. Since I am not willing to eat gluten to get sick so I can get the official positive, I'll live with the assumed positive!

Thanks again!

Heather

Boy can I identify with your post. I am a text book firmly diagnosed celiac. I had the blood tests more times than I can count. It took literally 15 years after the worst of the symptoms set in before I was diagnosed because I also show negative on blood tests. Why I don't know but lots of us do. Just listen to your body and by the way the tests for celiac will be negative if you are gluten free. If the tests he is doing are the gene panels do be aware that you can still be celiac even without one of the two most common genes. I am one of the folks that is living proof that you can be celiac and not DQ2 or DQ8. You are diagnosed. Now you can heal and get your life back.


Heather C.

July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

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Heather C.

July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

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Thanks you so much for your reply! I can't tell you how helpful it is to hear that someone else has been through a similar experience. I had tears in my eyes as I read the part where you say "you are diagnosed. Now you can heal..." And thanks for the warning that other tests may not come up positive either. Since I am not willing to eat gluten to get sick so I can get the official positive, I'll live with the assumed positive!

Thanks again!

Heather

I am very thankful for you that the doctor said... "but that the last time he did an upper GI test on me (in November), the biopsy was borderline positive for celiac disease!"

That experience with not getting test results is why many here encourage folks to get hard copies of all test results. You don't need an appointment to get them and you have a legal right to them. IMHO that doctor should have contacted you with those results it is not like he didn't have your address as it would be in his records.

I am sorry you had to continue suffering longer than you needed to but glad that you finally know and can now do what you need to for a return to health.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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