Do I Or Don't I Have Cd?

[mikedj]

Sorry for the long reply, but I feel comfortable laying it out.

JUNEIn June I had a small elevation of the ALT/AST liver levels. Being only 9 points over on AST my doc was not concerned but did see a climbing trend over the 2 previous tests. So he decided to move my twice a year blood check up to every 3 months and watch the trend.Sept. In September my liver levels jump almost 200 points each and it raised concern. July( In between the June and Sept, I had a Kidney stone like attack. My side hurt for 4 weeks and I had trouble urinating only a couple days, but there was a constant pain on my left side for the 4 weeks from back, to side, to front. I did an IVP and it showed no stone and no kidney infection. But all this was done in another city with another doc.)

Late Sept.My next move after my Internal Med doc consultation was a referral to a GI doc who took 20 blood tests, 11 tubes of blood.(Hepatitis, Liver levels again, etc) He also setup a ultrasound for Fatty Liver Syndrome. One of the blood tests was for celiac disease because my moms first cousin just demanded I tell him she had this thing called Celiac Sprue. About 6 days later I get a call and told all blood labs look good except the one for Celiac Disease and I had the "antibodies?" He wanted to know if I could do a biopsy the day after my ultrasound and I said sure. My liver levels had also come back down by half just over 9 days out from my high labs with the Internal Med doc.

TodayI just got a call saying that all looks fine and no indication of celiac disease. My procedure was this past Thursday. Once the exam was over Thursday at 8:30AM, I went gluten free. I've actually felt the best I have in a long time the last couple days. Yet over the phone the doc says it isn't probably celiac disease and wants to do my liver labs one more time in December and then do a liver biopsy if they are still elevated.

Here are my symptoms from the last 5-10 years of my life:

Stomach problems including ulcers, and constant Reflux and acid in top of throat

Night Blindness(This actually happend over a 2 week period about a year ago)

Oily Stools

Sores on scalp, but not on elbows/knees. Prescription shampoos have never helped

Disinterested in normal activities

Unable to Concentrate

Mood Changes

Weight Swings

Pee constantly changes color, often foul smelling like sugar pops cereal

Back pain, but only started hard, then sustained a lower level ever since that kidney attack, never had back issues until July.

___________________________________________________

My ultrasound also came back good on the Fatty Liver deal today.....

Now.....

1. I've felt great the last 2 days of my 4 days having very little gluten in my diet, would I see progress that quickly?

2. I've not went free, just replaced 3 of 4 meals the last four days as gluten free.

3. Saying my "Villi"(sp?) looks great and nothing with the biopsy, am I just to ignore the positive blood level? Can you have the disease and test negative on the biopsy?

Thanks for the replies and this wonderful site!!!!

[Happycat]

If you feel better when you are gluten free then I would stay gluten free. Sometimes the biopsy will be negative but your positive bloodwork probably means you are gluten sensitive. If you are gluten sensitive you need to remain on a gluten free diet.

My son has many of the same symptoms you have. He is IgA deficient and has a positive IgG. He too, has had neg. biopsies. I wrote to Dr. Fine of Enterolabs and he said a positive IgG means he has antibodies to gluten and should be on a gluten free diet. His doctors have basically no idea what to tell me or him.(he is 19)

Celiac could be one of the hardest diseases to diagnose, it certainly is often misdiagnosed.

If I were you I would stay gluten free

Just my opinion,

Good Luck and take care,

Lisa

[mommida]

A gluten free diet will not hurt you.

If you have one test saying there is a problem with gluten, and you feel better off gluten that would convince me.

Where exactly do they do the biopsy at, when there is miles of intestine?

Laura

[tarnalberry]

You could be gluten intolerant (your body reacts to gluten) without yet being celiac (having damaged villi in the intestines). Of course, they also could have missed the damage on the biopsy. The biggest test is how you feel on or off the diet, and doing what makes you feel best. It won't hurt you to stick with the diet, of course.

[mikedj]

Wow, thanks for the quick replys. As to my suggestion, the doctor agreed that I should stay gluten free until my next liver labs in December. We both discussed the difference in being Gluten Intolerant and Celiac over the phone. But here is what we didn't discuss.

What are the links to Celiac and Liver elevations on a biological level? Or even laymans terms? I'm trying to find if its the actual damage to the villi(sp?) that causes liver elevations to go up. If so, then even if being G. Intolerant and going on a helpful diet will be great, I may have other things going on with my liver? Now if it isn't damage to the villi in the intestings that cause the liver to elevate, yet its the gluten in some way, then I've got hope this diet will also lower my liver elevations.

Anybody know or have any thoughts on the ties of Celiac or Gluten to Liver elevations? We know celiac disease "can" lead to these liver issues I'm having, but would just simple intolerance with no intestine damage do the same?

[3boyzmom]

IS it the celiac disease that induces the liver problems or the gluten intolerance? The only reason they know about the multiple auto-immune disorders that are associated with celiac disease is because celiac disease is being studied by scientists. No one has started studying gluten intolerance in and of itself. Actually, people with elevated IgG are dismissed and given no direction.

I strongly believe the gluten intolerance comes first... then depending on your genetics, the auto-immune disorder comes next... then if you live with a gluten intolerance and continue to consume gluten, everything is susceptible to illness.

So, is it the damaged villi that cause the liver disfunction or the elevated anti-bodies to gliadin?

Only science can tell... once someone starts looking at gluten intolerance as the tip of the iceberg.

Here are a couple of links to articles showing that a gluten free diet can halt and even reverse hepatic damage!

Open Original Shared Link

https://www.celiac.com/st_prod.html?p_prodid=100

https://www.celiac.com/st_prod.html?p_prodid=157

[mikedj]

Thanks 3BM, those links help. Looks like I'm one of those in the "No Direction" group, but my doctor is listening to all the feedback here and was willing to suggest I try the Gluten Free diet until December. We shall see.

[KaitiUSA]

Go with the blood test. If you are a new Celiac and have not had it long there may not be enough damage to the small intestine for a biopsy to detect.

[mikedj]

For 3boyzmom....

Right now the doctor still thinks I only have the intolerance, I'll be getting all my exact level numbers to post later this month. Since my last post I've went on an almost gluten free diet to see if it would help with my numbers. My numbers went down from the 233/133 to 66/28 last week. The doctor wanted to go ahead with a liver biopsy but I said give it one more turn. I'm going to go 100% free and see if the 66 number gets back in range. The doctor as you noted said he really had no info on "Intolerance Only" causing the liver labs to be so high.

Has anyone ever seen any back pain with the pain going down the left leg into the knee area? Almost sounded like a ceratic nerve(sp?) type deal, but I did an MRI last week and my back area looks great. The only reason I mention this is because it all started when my liver labs shot so high. I thought it was a kidney stone at first, but the IVP and Ultrasound came back fine. But the back pain has increased in pain each month and I can't clue into what is causing it.

If anyone is a newbie to the forum because a doctor thinks they are walking down the celiac or intolerance line, I am a believer in going gluten free. For what level I've been able to do so far in the intolerant group, I've seen a 90% improvement in my overall life other than the new back pain. Talk about mood improvement.

Go Gluten Free!

[darlindeb25]

mike--its great you have shown improvement, but you must get 100% gluten-free because even a little gluten is doing damage to your system--a celiac or even gluten intolerant person must be completely gluten-free---ok, deb

[FreyaUSA]

Mike, think of gluten like this...(okay, I'm in a mood )

You have a family history (whether you know it or not, that's how genetics work) where many people have died from lung cancer. Here you are, smoking a cigarette, coughing and having trouble breathing and generally feeling like crap (that's the gluten to an intolerant person.) Now, you don't have cancer yet (that's the celiac disease part, or you might, but it wasn't detected because it's not completely coating your small intestine) but are you going to keep putting that stuff into your body until you do? Fortunately for you, you know what is causing your problems and if you stop now, you will avoid the physical damage and, in fact, if the damage is there, will start healing. (Thus the smoking analogy falls apart. But, if you didn't know about gluten intolerance/celiac disease, you could very well die from this.) What's good about stopping before you have the full blown condition? Gluten intolerance can cause many more problems than just celiac disease. Cancers in various part of your body. Other autoimmune diseases. It can attack your brain just as it attacks your small intestine (causing neuropathies and ataxias and basically atrophying your cerebellum.) Nerve damage. Other food intolerances. Gluten intolerance itself is the primary danger to you, celiac disease is just one of the condition's manifestations.

I often think these pep-talks are as self-directed as outwardly. Getting our minds on straight, so to speak. Anyway, the pain could be nerve damage. I have it in my right arm/hand, though my father had it in both his legs as well as both his hands and arms. However, I don't recall my father mentioning it as a shooting pain starting at the hip, though at the end there, he tried not to complain about anything, so I really don't know.

Oh, and go off gluten completely.

[darlindeb25]

FreyUSA----you explained it so well was the best explaination in laymans terms that i have ever heard--very well done deb

[granny]

Fortunately for you, you know what is causing your problems and if you stop now, you will avoid the physical damage and, in fact, if the damage is there, will start healing. (Thus the smoking analogy falls apart. But, if you didn't know about gluten intolerance/celiac disease, you could very well die from this.)

I love your anology and want to add that the smoking anology doesn't fall apart, (as I see it) if you quit smoking. I was in that boat! Family history, heavy smoker for 40+ years, I didn't believe that I could improve. After the celiac disease hit two years ago, altho I went gluten-free a year ago, I just couldn't cope. I was too far gone with the lung damage and the celiac disease complications. In March 04, when they put me on oxygen at home, I thought this is stupid(for me)! I quit smoking!! WOW!! What a difference! My lungs are healing, just like the villi would in your anology, and I don't remember feeling so good. I still get glutened, if I'm not careful but, all in all, I'm so much better since being Gluten and Smoke free. I encourage anyone who smokes, to just quit!

There is life after quitting smoking and Gluten, and it's great. I know this isn't a smoking message board but I felt it was important to follow up with the anology and to let people know that BOTH can be done. Thanks for listening. granny

[mikedj]

Thanks for the wonderful replies. The focus of my education or search is now surrounding Celiac and those with Intolerance and its ties to Liver issues. It seems as though I've got everything under control now but my liver labs have been too high for almost 18 months now. I looked on this board and googled with every search string possible, but I've yet to find a good site or info on how people with Gluten issues also see liver ALT/AST increases.

Am I missing a good thread here or a quality medical website that lays out why people with Gluten issues often have high liver labs? I'd love to find a medical research type link that describes the chemistry behind it if anyone knows of one.

Also, this site and every other site educating you about Celiacs always lists a group of symptoms you could watch for. But you never see Liver issues universally at each site, actually very few even mention it in things that might be a red flag for Gluten issues. So why exactly is it that when you have liver elevations your gluten levels get tested?

[red345]

"Am I missing a good thread here or a quality medical website that lays out why people with Gluten issues often have high liver labs?"

Mike, try substituting Celiac Sprue for Candidiasis during your next search and see what you come up with. You may be surprised. You may also want to rule out Giardiasis-only way you're going to know for sure is by way of insisting upon multiple stool cultures. I don't know if you're a drinker, but that alone could cause that problem on the enzyme test, too.

[3boyzmom]

Mike,

I only just spotted your response today.

I am unsure as to why there is not more mention of liver problems in association with celiac disease... but I did a google myself and came up with these links:

Open Original Shared Link

Open Original Shared Link This is just an antecdotal story and she mentions having elevated liver enzymes as a red flag...

I don't see much else out there... many sites list "mildly elevated liver enzymes" as a sign of celiac disease, but other than that there's not much else.

I am glad to see that your numbers dropped! That is a great result... but I agree with everyone else and strongly encourage you to go completely gluten-free. Hopefully you will see improvements in your liver labs... if not, please have your liver checked out... for it may be something that will not respond to the diet alone... maybe it's something more.

God bless and good luck!

Priscilla

[dizzy]

Hi Mikedj, I just read these posts, and what caught my eye was all the symptoms, just like me. I thought I was crazy, but sometimes my pee smelled like sugar smacks, the one with the frog, is that because of gluten? weird.. and, what is the blood test I can ask my doctor for, is it one that checks for intolerance? I was just confused because I thought that the only thing available was the stool tests from Dr Fines web site, so Im just checking.... thanks...