It's All Starting To Fit Now!

[ncteacher]

I've been very low on energy pretty chronically for the past 6 years now. Interestingly, low energy periods always coincided with abdominal pain (very similar to what MS sufferers call the "bear hug"). Other symptoms progressively got worse: shortness of breath, joint pain, chest pain, nerve pain, back pain (sciatica), anxiety, and others. Two trips to the MRI cleared me of any major problems.

Blood tests in 2010 FINALLY picked up what had become SEVERE anemia and Vitamin D deficiency (my doctor wondered how I was still walking around). Doc told me that anemia that bad can only come from a bleed. I had upper and lower endoscopy to look for those bleeds, but only one benign polyp was found and removed.

After that, the advice was to take iron and D supplements and call if symptoms got worse. I had already suspected I was lactose intolerant, so I cut dairy out and looked for improvement, and there was some--although I still felt horrible by the end of every, single day. It wasn't until I ate a particularly bread-heavy breakfast one morning that I suspected gluten may be the issue.

Anyway, my whole point here is that I went through my medical records the other day and realized that there was never a blood test done to measure anti-gliadin antibodies. Anyone else have a similar misadventure? I'm just wondering if those tests may have made things a little less miserable and drawn out. Plus, I don't even think the upper endoscopy went as far as my duodenum...they were looking for stomach ulcers.

[mushroom]

Welcome to the board, and welcome to the long-time-sufferers club. Your tale is unfortunately too similar to those of too many here.

When a patient walks through the doctor's door with symptoms of what we now know to be celiac disease, that is so seldom the first, second or even third, fourth or fifth thing that pops into his/her head. The most common one seems to IBS They will think of stomach ulcers, they will think of cancer, Crohn's, ulcerative colitis; they will think of mental illness/disorder, hypochondria, any of hundreds of other diagnoses, but only one in a thousand will think, "Aha, this could be celiac disease." So they do every blood test in the book except celiac, and they perform upper and lower endoscopies without taking the celiac biopsies, and tell us to take medications to treat our symptoms

Congratulations on figuring it out for yourself

[Tusofsky]

I'm shocked, after all I've seen in these forums, that during my endoscopy (looking for ulcers) my doctor decided to take biopsies to test for celiac. He never ONCE mentioned this to me before hand. He mentioned it in passing after my endoscopy was done (I didn't even know what he said, I saw him for like 20 seconds and wooooosh he was gone again) but on my report, there it was. "Biopsies taken with cold forceps to test for celiac."

Now if only he'd talk to me about it He's not very patient friendly, as I said, I barely have seen him. I haven't gotten my results back, but seeing that then learning about it, everything seems to just CLICK. But the thing is, I would have NEVER thought to check for celiac, so I'm glad I found a doctor who actually did.

I saw in another thread, if you can get tested for it, then probably should? The point was "if you KNOW you're less likely to cheat" which I think is true. I know it would be for me anyway haha BUT still, if you're feeling better (either way) then that's awesome! It's what everyone wants.

[Skylark]

I think diagnosis misadventures are more common than not. I spent many years on psych meds and nobody thought to connect the fatigue, bipolar illness, chronic diarrhea, stomach-aches, thyroid problems and .... CELIAC.

Like you, I'm not going to eat wheat and get tested. I don't really care about the labs or results because there is no question in my mind that I need a 100% gluten-free diet. (And very little question in my mind that I am celiac rather than gluten intolerant.)

[Broberts]

I am sorry to hear how bad you have been feeling. I have not been as sick as you, but I have had low energy for awhile now and it wasn't until about a month ago when I woke up with severe joint pain that I thought I should see a doctor. He tested for many things and one came back positive for celiac. For the week prior to the doctor visit, I cut out gluten. I felt better almost immediately. It has been about three weeks now and I now realize I have at least an intolerance to gluten. Today the doctor agreed and things from my past have started to make sense. Anyway I am not having anymore testing done as I know that I can't tolerate gluten. I proved it again tonight with dinner. The treatment is about the same so I don't need a specialist at this time. Good luck to you and try going gluten free, you will notice a difference quickly. I now realize it isn't normal to feel like you ate a thanksgiving meal every time you eat a meal. Good luck.

[mushroom]

I am sorry to hear how bad you have been feeling. I have not been as sick as you, but I have had low energy for awhile now and it wasn't until about a month ago when I woke up with severe joint pain that I thought I should see a doctor. He tested for many things and one came back positive for celiac. For the week prior to the doctor visit, I cut out gluten. I felt better almost immediately. It has been about three weeks now and I now realize I have at least an intolerance to gluten. Today the doctor agreed and things from my past have started to make sense. Anyway I am not having anymore testing done as I know that I can't tolerate gluten. I proved it again tonight with dinner. The treatment is about the same so I don't need a specialist at this time. Good luck to you and try going gluten free, you will notice a difference quickly. I now realize it isn't normal to feel like you ate a thanksgiving meal every time you eat a meal. Good luck.

If you tested positive for celiac, you are celiac, and no, you don't need a specialist to tell you that. Welcome to the board.

[GottaSki]

Welcome - took over 20 years of seeing docs for the same symptoms that eventually became so bad I was in bed except for a few hours a day - the year I was dx'd I had over 50 blood tests and scans looking for every obscure disease until my internest called all five other docs in the clinic that day into the room so they could all question me at one time - one of them had I been tested for celiac - my doc said yes and I said NO - I has never heard of nor researched celiac or gluten. Well I was possitive and for a very long time I was upset/extremely angry with all the docs that had dismissed all my symptoms over the years on anemia, strss, overwork, hormones, depression -- anything rather than really listening to my symptoms.

Unfortunately my story is common - it seems there is improvement with celiac awareness...but it will take years before many docs add it to the front of their thinking - rather than one of the last things.