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A Week-long K.o.?

PacMan

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PacMan Newbie
PacMan
Posted

Hi everyone,

I've read many personal accounts of celiac on here, and I think this website is GREAT! I wanted to see, though, if someone has had an experience similar to mine. I will be getting endoscoped and my small intestine biopsied this week for a definitive answer regarding celiac, but I still wanted to put this out there...

Beginning earlier this year, I would get week-long bouts of nausea and extreme fatigue that would last a week. I would wake up in the morning and immediately have to vomit, and I would be "out" for most of the day. I could easily sleep 12-18 hours per day. I wouldn't want to eat, and I'd barely take in 500-700 calories a day. Eating was a struggle--and that alone was definitely not "in-character" for me. Like I said, this would usually last 7-10 days, and then I would slowly emerge out of it. Additionally, these episodes would happen at least once a month, and have been since the beginning of 2009. Needless to say, they wreaked havoc on my professional and personal life. Mornings were always the most difficult, and by the end of the day, I could eat something (like a peanut butter/jelly sandwich or cookies...they seemed the only appetizing things at the time).

Initially, I just thought I was depressed, going crazy, etc., but after visiting an endocrinologist, my Gliadin-IgG test came back with a reading of 15.5 u/mL. However, my ferritin levels were also very high (330+), and my doctor is testing me for hemochromatosis.

I always had a "nervous stomach," ever since I was in middle school. Going to the restroom upwards of 5-10 times a day on a consistent basis just became a fact of life.

Even though I may not have celiac disease, does the Gliadin-IgG test alone indicate an intolerance to gluten? Is it possible to be gluten-intolerant and also have hemochromatosis? The GI doctor I'm seeing said she would expect me to be anemic rather than have an elevated iron level, but she wouldn't tell me if the two could be co-morbid.

Does any of this sound familiar? Does anyone have a similar experience?

I'm planning on going gluten-free once I have my endoscopy. The doctor has had me eating as much gluten as possible for the past 10 days, and yesterday, I had another (albeit, less intense) episode of nausea and sleep. Today, I'm feeling better, but that seems to be the story of my life the last few months--sick, feeling like death warmed over, and then a period of time of feeling "normal."

Any input would be appreciated! Thank you!

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runningcrazy Contributor
runningcrazy
Posted

I am having stomach issues as well, but not as severe as you. I am waiting for an accurate answer to my problems I've been having for a long long time.

Even if you have everything negative for testing, why not try the diet? What could it hurt?

If you find you feel better it may be intolerance, not celiacs. If you feel better you may decide to stick to it.

The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Hi everyone,

I've read many personal accounts of celiac on here, and I think this website is GREAT! I wanted to see, though, if someone has had an experience similar to mine. I will be getting endoscoped and my small intestine biopsied this week for a definitive answer regarding celiac, but I still wanted to put this out there...

Beginning earlier this year, I would get week-long bouts of nausea and extreme fatigue that would last a week. I would wake up in the morning and immediately have to vomit, and I would be "out" for most of the day. I could easily sleep 12-18 hours per day. I wouldn't want to eat, and I'd barely take in 500-700 calories a day. Eating was a struggle--and that alone was definitely not "in-character" for me. Like I said, this would usually last 7-10 days, and then I would slowly emerge out of it. Additionally, these episodes would happen at least once a month, and have been since the beginning of 2009. Needless to say, they wreaked havoc on my professional and personal life. Mornings were always the most difficult, and by the end of the day, I could eat something (like a peanut butter/jelly sandwich or cookies...they seemed the only appetizing things at the time).

Initially, I just thought I was depressed, going crazy, etc., but after visiting an endocrinologist, my Gliadin-IgG test came back with a reading of 15.5 u/mL. However, my ferritin levels were also very high (330+), and my doctor is testing me for hemochromatosis...

As you've probably seen already, there's almost an infinite variety of symptoms associated with celiac disease. I haven't run across yours, but I'm just another yoyo on the Internet; my knowledge is limited. In case you haven't seen it, here's the Mayo Clinic's take on high ferritin levels: Open Original Shared Link and hemochromatosis: Open Original Shared Link One possible cause for high ferritin levels that they mention is rheumatoid arthritis. Of course, you'd know if you had that, and presumably would have mentioned it if you did, but it is something that is often associated with celiac disease.

Good luck, welcome to the board, I hope you find your answer soon, and I'm very sorry that you're going through this.

PacMan Newbie
PacMan
Posted
  • Author

Thank you Fluffy Assassin!

I'm finding out much of what you said to be true--things like celiac can cause a variety of symptoms. I had my endoscopy and biopsy yesterday, so I'll have to wait a week for the biopsy results to come back, but the doctor said my duodenum didn't look like it had the "typical" visual symptoms of celiac. We'll see, though. Good news is that I do not have hemochromatosis...evidently, I have only one of the two necessary genes for the disease, so even though not having that diagnosis is good news, it still doesn't answer why my iron is so high. I spoke with a friend today, and he said that many of these autoimmune diseases, and even food allergies, wreak havoc on our systems, and cause weird things like strange blood readings.

It'd be nice to get some solid answers though! :-)

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