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Desperate For Help

Pink Angel

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Pink Angel Newbie
Pink Angel
Posted

I am brand new to this forum and am afraid I'm going to ask something g that's been asked before, but...I'm desperate!!

I have had severe GI issues for years (constipation and nausea) I've been told it's severe IBS, which has been frustrating since nothing much can be done for IBS. In July 2008, I became so impacted that I had to have half of my colon removed. I drank 2 doses (2 gallons) of GoLYTELY and produced nothing.

Following the surgery, I was still in severe pain and was kept on a dilaudid drip through PICCADILLY line for 2 months. That caused complete Gastroparesis. Which led to detoxing from Dilaudid. Which led to other complications...argh. It turned out I had a horrible bacterial overgrowth in my small intestine.

Fast forward a year...the constipation returned with a vengeance. I was achy and fatigued all the time, to the point I was missing work. I developed a rash on my back and legs. I developed Raynaud's and mouth ulcers. I had to use an enema i order to have a BM. Things were getting really bad.

I was tested for celiac and blood tests came back negative, so I dismissed it. BUT...when my GI started talking about putting a pace maker into my gut, I got desperate and began a gluten-free diet. Two days later, the fatigue was greatly improved. Five days later, I had a BM without an enema. And then I had two the next day. I've had 2-3 a day since then. My stomach, it turns out, wasn't fat. It's flat, unlike it's distended state prior to gluten-free.

So...is it possible to have Celiac and have a negative blood test? I remember my doctor saying "there are two tests. I'm going to do the better one on you." I've had lots of colonoscopies but never an endoscopy. HELP!

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mommida Enthusiast
mommida
Posted

I do think it is possible to have had a false negative Celiac test.

It is also possible that gluten can "trigger" other disorders. (Eosinophilic disorders for an example.)

Keep a food journal since many sensitive people have more than one allergen to avoid.

Stormy Rookie
Stormy
Posted

I saw in another post someone had mentioned that a fair amount of blood tests come back falsely negative. If going gluten free is helping, I'd say stick with it. The more research I do, the more I find that Celiac Disease can be doing to your body without realizing it. It's kinda scary.

cassP Contributor
cassP
Posted

I am brand new to this forum and am afraid I'm going to ask something g that's been asked before, but...I'm desperate!!

I have had severe GI issues for years (constipation and nausea) I've been told it's severe IBS, which has been frustrating since nothing much can be done for IBS. In July 2008, I became so impacted that I had to have half of my colon removed. I drank 2 doses (2 gallons) of GoLYTELY and produced nothing.

Following the surgery, I was still in severe pain and was kept on a dilaudid drip through PICCADILLY line for 2 months. That caused complete Gastroparesis. Which led to detoxing from Dilaudid. Which led to other complications...argh. It turned out I had a horrible bacterial overgrowth in my small intestine.

Fast forward a year...the constipation returned with a vengeance. I was achy and fatigued all the time, to the point I was missing work. I developed a rash on my back and legs. I developed Raynaud's and mouth ulcers. I had to use an enema i order to have a BM. Things were getting really bad.

I was tested for celiac and blood tests came back negative, so I dismissed it. BUT...when my GI started talking about putting a pace maker into my gut, I got desperate and began a gluten-free diet. Two days later, the fatigue was greatly improved. Five days later, I had a BM without an enema. And then I had two the next day. I've had 2-3 a day since then. My stomach, it turns out, wasn't fat. It's flat, unlike it's distended state prior to gluten-free.

So...is it possible to have Celiac and have a negative blood test? I remember my doctor saying "there are two tests. I'm going to do the better one on you." I've had lots of colonoscopies but never an endoscopy. HELP!

WOWWWW this is quite a testimony- and could really be so helpful to others who just listen to their doctor say "negative" and then never go gluten free.

1st off- your doctor is wrong to say there are only 2 tests. and how does he decide what is the best test????? so many of us have only had 1 positive out of 3... or very suspicious "weak positives"... some docs think the TTG is the best... others now are saying the Deamidated Antigliadin is the best.. and in other places i have read the Endomysial Antibody is 100% specific to Celiac. this disease is so damn tricky and so misunderstood that you really need ALL 3 of these Tests.. PLUS a Total Iga Serum test. it's just too presumptious to just do one test- these doctors are putting money ahead of our health!!!

your body KNOWS!!! and im so sorry you had to go thru all that pain- but so happy you're deciding your own health now- i hope you continue to recover!!!

fairydust81 Rookie
fairydust81
Posted

I really feel for you, it's so awful what you have been through...

It is always possible to have false negatives and like other diseases even people with coeliac, still with gluten in their diet can have negative bloods - rheumatoid arthritis for example, you can have all the outward symptoms and bloods for inflammation are high, but the key diagnostic test can come back negative - thankfully that is well recognised and is now called sero negative RA -

I have been doing a food diary for the last month and this helped to pinpoint a pattern between my rash and the arthritis flares and all the GI issues, definitely helps to show any patterns/trends between symptoms you have and foods that you eat etc.

I hope things continue to improve for you now you are gluten free

Skylark Collaborator
Skylark
Posted

I'm glad to hear you're better!

Celiac blood tests only detect celiac maybe 70-75% of the time so it's absolutely possible to be celiac and have a negative blood test! It's also possible to be very sick from non-celiac gluten intolerance. Trust your response to the diet above anything else.

Pink Angel Newbie
Pink Angel
Posted
  • Author

Thanks so much, everyone! I'm touched that people who I don't even know would respond to my post!

I have an appointment with my GI tomorrow. I'm dreading telling him that I went gluten-free because along with it, I'll be telling him that I'm not taking the meds he prescribed anymore as well. (He gave me Amitiza and told me to drink GoLYTELY once/month, but since neither worked, I stopped both).

Does anyone have suggestions for what I should be asking him about? Should I have Amy tests done, or does it even matter if I'm not eating gluten anyway?

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GFinDC Veteran
GFinDC
Posted

The only thing I'd ask your GI is to recommend another GI or doctor who understands celiac disease. And then I'd stop seeing him.

They can do an endoscopy and take biopsy samples from your upper small intestine. Those can be checked under a microscope for villi damage. But if you have been gluten free it isn't likely to show damage after a few weeks.

Same with the blood antibody tests, they are no use after you go off gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks so much, everyone! I'm touched that people who I don't even know would respond to my post!

I have an appointment with my GI tomorrow. I'm dreading telling him that I went gluten-free because along with it, I'll be telling him that I'm not taking the meds he prescribed anymore as well. (He gave me Amitiza and told me to drink GoLYTELY once/month, but since neither worked, I stopped both).

Does anyone have suggestions for what I should be asking him about? Should I have Amy tests done, or does it even matter if I'm not eating gluten anyway?

Don't worry about telling the doctor you went gluten free and it is helping as it may help others who come along after you. The rate of false negatives is pretty high with celiac testing but the body knows the answers. It seems pretty clear that the diet is helping you a great deal. Stick with it strictly. Perhaps your experience will help the doctor suggest trying the diet for folks that have negative blood work but still have symptoms suggestive of celiac. Do ask the doctor to run a vitamin and mineral panel to make sure you do not have any defieciencies. If he doesn't want to do it ask your GP.

Pink Angel Newbie
Pink Angel
Posted
  • Author

Here is the oddest thing...I LOVE my GI. He's the director of a top university hospital an specializes in functional motility disorders. When I had the hemicolectomy an went into complete Gastroparesis, he's the one who helped me transfer to his hospital and treated me for narcotic bowel. He deals with people who haven't been believed...and he is the one who ran the controversial hydrogen breath test on me and discovered a horrible bacterial overgrowth. Oh well we shall see how it goes tomorrow! (BTW...I was accidentally given gluten tonight at a restaurant, even after calling ahead and informing the waitress that I needed gluten-free...so I'll see if it does anything)!!! Thanks SO MUCH to all of you. I'm only 2 weeks into gluten-free. I'm hoping it only gets better. :)

T.H. Community Regular
T.H.
Posted

Wishing you the best of luck with this one!

Hopefully, if he's this good, your experience will really help him become even better. There's so much information to learn, these days, that sometimes it's hard for a doctor to keep up. And considering that constipation is only recently recognized as a celiac issue (I had constipation, but not nearly as bad as yours. Mine would come and go).

Your experience might end up helping a lot of his future patients. Maybe even some of his current ones. Let us know how the appointment goes!

mommida Enthusiast
mommida
Posted

You could have the genetic testing done to see if you are positive for known Celiac genes. That is not the "gold standard" diagnoses though.

It is also known that a gluten free diet is helpful in treating IBS and autoimmune disorders.

ravenwoodglass Mentor
ravenwoodglass
Posted

You could have the genetic testing done to see if you are positive for known Celiac genes. That is not the "gold standard" diagnoses though.

It is also known that a gluten free diet is helpful in treating IBS and autoimmune disorders.

That is an option but if you are one of those celiacs that don't carry one of the two most common genes it may end up confusing matters. There are folks who are diagnosed by both blood and biopsy who then get the gene tests done and are told that they couldn't be celiac as they don't have the genes. That happened in my family as we carry a gene that is not a recognized celiac associated gene here when it is a recognized celiac associated gene in other countries.

Also keep in mind that there are folks who have the associated genes and never develop celiac. So in the end while gene testing can be useful it is not diagnostic.

mommida Enthusiast
mommida
Posted

That is correct some genetic testing can just add to the puzzle. They don't know all of the genes associated with Celiac and there is still error rate. At least 30% possibility of human error for any test.

Our genetic testing experience... My daughter positive for DQ2 and DQ8. My testing completely negative for any known Celiac genes and clearly not even showing a genetic link to my own daughter. Prometheus would not retest, just rescinded the 98% accuracy and also declared that genes mutate. They said I must have fallen into the 2% range of known miss and 30% of human error in handling.

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    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

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      By trents · Posted

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      By Lynnard · Posted

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