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Possible Cd?


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6 replies to this topic

#1 Larteun

 
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Posted 21 May 2005 - 10:00 AM

Hello I'm new to the site. I haven't been diagnosed with celiac disease, but after being made aware of the disease by a friend, I find I have many of the symptoms.

After 6 months and many tests my alkaline phosphotase level had reached 1700+ and my family doctor referred me to a gastroenterologist. He determined the alka. phos. was coming from my liver verses my bones. I noticed high alka. phos. levels is one of the symptoms, but it seems the source is usually the bones not the liver. Am I correct? Or can celiac disease cause the liver to increase these levels?

The first thing the gastroenterologist did was put me on 40 mg of prednisone and within a few days I lost the blotted feeling, sever headaches, body aches, and fever. A liver biopicy indicated it could be autoimmune hepatius, but the sample wasn't large enough to be conclusive. After a a few weeks he suggested another biopicy to confirm, and it turned out negative, my liver was in good shape with no damage. The prednisone brought my alka. phos. levels down, and he started to wean me off. The first day completely off my headaches and fever returned. He checked my blood again to find the phos was rising again.

Now I'm on 20 mg a day and it seems to help some, but not as much as originally. I'm taking 600mg ibuprofen 2-3 times a day. I've been through about every test imaginable except my small intestine. I've also seen an infectious disease doctor and an alergist with no results. I see the gastroenterologist again in 2 weeks, and will ask him about celiac disease. He hasn't made any mention of it being a possible cause of my problem, he did say he thought my liver problem was a secondary problem caused by something else.

Sorry this is so long, the main question I have is has anyone know if alka. phos. elevations from the liver can be a result of celiac disease? I want to go to the doctor with as much info as I can get. Thanks for any help, Larry
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#2 cdford

 
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Posted 21 May 2005 - 10:06 PM

Mine is out of range as well and it is definitely my liver as a result of the celiac disease. The simplest way to determine if celiac disease is your problem is to have a celiac panel (blood work) done. It will tell you much.
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Donna
South Georgia
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

#3 Larteun

 
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Posted 22 May 2005 - 03:26 AM

cdford
Thanks for the response, it may sound strange but this is the best news I've received since seeking medical help for my symptoms. :D
After countless tests without any answers I was finding myself wishing that the next test would find some problem just to give some direction to an end of my misery. I missed so much work the last 2 years, there was a lot of financial stress added to my already miserable list of symptoms.

My spleen is also enlarged and I see that celiac disease is said to effect among other things the spleen, liver, and gall bladder. I have beta thalassemia and I was told this anemia disease is the cause for that.

My gastroenterologist seems to be an excellent doctor. I'm pretty certain he will be more than happy to persue celiac as the problem if I bring it to his attention. From some of the posts I've read it appears many doctors are ignorant about celiac disease.

Thanks again, your confirming the possible relationship between my liver disorder and celiac disease, at least lifted my spirits and I'm looking forward to having this test and hopefully putting these symptoms behind me. :)
Larry
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#4 cdford

 
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Posted 22 May 2005 - 10:21 PM

Glad to be of help. I hope your gastro doc is as helpful as my first was. It is so much easier when you have support. Make sure you get any testing done prior to going gluten-free to ensure quality test results. Even then, it is possible to get a false negative just not as likely. You may be surprised at how much you will improve after being gluten-free for a while if the root of the problem is really celiac disease.
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Donna
South Georgia
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

#5 Larteun

 
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Posted 23 May 2005 - 04:58 AM

So far I really like my gastro doc, he seems very concerned about finding the solution to my problems. In the last 4 months he has personally called me at home 11 times. I'm not used to that personal touch from a doctor. :)

That fact that he has made no mention of celiac disease as a possibility seems to be the general lack of knowledge about the disease among most doctors. That's why I want to get as good an understanding of celiac disease before disscussing it with him.

This site has a wealth of info and I'm picking up alot of it here. When the general medical industry as a whole is somewhat ignorant about such things as celiac disease, I feel there's great value in the opinions of the people who are/have gone/going through this condition.

Will be talking to the doc later today. Thanks to all for helping me get some understanding of celiac disease.
Larry
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#6 skbird

 
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Posted 23 May 2005 - 07:30 AM

Interesting that a high Alk Phosphatase is indicative of celiac disease. I have not been diagnosed with celiac disease but gluten-intolerance, yet my Alk-P has always been lower than the normal range.

My doctor always blows over it, saying no biggie - only worry when it's high. But I did some research and found a reference that says it could indicate pernicious anemia (deficient in B12) so I'm taking that on a regular basis now.

Thanks for the info.

Stephanie
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Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11

#7 Larteun

 
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Posted 23 May 2005 - 08:35 PM

I go in for the blood test tomorrow morning. My gastro doc said he had patients with celiac disease, but didn't think I fit the profile but was happy to explore any possibilities at this point.

I'm not going to wait for the results of the test before starting the gluten-free diet, I'll start it tomorrow after the test.

I was on the atkins diet for 3 months a couple of years ago, probably wasn't completely gluten-free as I wasn't concerned with gluten and eat some processed meats and dressing that may have had gluten added. But I did feel alot better when on it than I had before and since. I figure going gluten-free will be easier than atkins cause I can still have my taters. :) Just have to watch what I put on them, and any seasoning I use on meats.

Thanks for the help, Larry
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