Retest For Celiac?

[Smeech]

Retest for Celiac?

Okay, I hope I can keep this short.

Nearly 2 years ago, I had a blood test done because I was having abdominal pain and have always been skinny and unable to gain weight. The blood test came back from the lab and the doctor wrote: "Blood markers suggest celiac disease." I had to refer to my GI Dr. for an endoscopy.

I had an endoscopy done. I got a letter back from the GI. It said that testing for celiac came back negative, but I do, however, have a 'irritation to grains'.

I got caught up in life and didn't followup quick enough. Then the GI went on leave due to an illness. He recently returned.

Now, I don't know if this is related or not,

1. but during the first week of February, I had what I thought was the stomach flu or food poisoning. It was basically vomiting and diarrhea, but within a 24-hour period.

2. About a week later I had wattery diarrhea for about 5 hours.

3. A week after that, I had a recurrance of what I had two weeks prior: stomach flu/food poisoning. This time it was even shorter..

4. About a week later, I had wattery diarrhea again, all within one day.

5. On the past Friday, I woke in the morning because I was heading out to Cancun. After eating Cheerios and milk I shortly needed to go. Wattery diarrhea again, but for only 3 hours...perhaps because I took Immodium.

Yesterday was okay, a little wattery at first, but alas I had solid stools two times.

Today, shortly after eating pizza, tortilla chips and a corona for late breakfast (it is Cancun, remember), I get wattery diarrhea. I still have it at this time (about 6 hours later).

Now, I saw my Doctor a week before heading off to Cancun because I was concerned about what had just happened the past month. He tested my for Giardia and H. Pylori (by request) and both came back negative. He did mention, at least twice, how he was surprised that celiac came back negative. He gave me a reference to the GI, which I will visit when I return from Mexico.

Could it be that my tolerance is getting worse? Has anyone else experience (I guess this would be) episodic diarrhea when not on a gluten free diet? Now, should I have a blood test (for Celiac) again? Should I go see the GI for another endoscopy? Is it possible that the endoscopy had a false negative or could not find traces of celiac disease?

Thanks!

[CarlaB]

Damage due to celiac can be spotty. If they don't take the biopsy from just the right spot, they can easily miss the damage. The biopsy can prove celiac, but cannot rule it out.

Your symptoms sound like celiac. With a positive blood test, you could try the diet and use the blood test and dietary response for your diagnosis. I suspect you will feel much better gluten-free.

Stick to the fruit and margaritas down there and you'll feel much better!

[Smeech]

Damage due to celiac can be spotty. If they don't take the biopsy from just the right spot, they can easily miss the damage. The biopsy can prove celiac, but cannot rule it out.

Your symptoms sound like celiac. With a positive blood test, you could try the diet and use the blood test and dietary response for your diagnosis. I suspect you will feel much better gluten-free.

Stick to the fruit and margaritas down there and you'll feel much better!

Carla, thank you for the reinforcement!

When someone has celiac, can reaction be hit-or-miss? Example: eat all kinds of food (with gluten) 5 days in a row, feel okay, good bowel movements, but on the 6th day develop symptoms (eg. diarrhea)?

I stuck to a light, gluten-free dinner tonight..now I'm resting up in my room because I'd rather feel better tomorrow than stay up late and party...hehe

[CarlaB]

That's probably just because your system is so overwhelmed with dealing with the gluten. I became much more sensitive when I went gluten-free. It was like before my body just had to deal with it when it could. Now, my body wants it eliminated ASAP! That is a very common thing.

Think of smoking. If someone smokes a pack a day, a single cigarette won't make them sick even though smoking is affecting their health. Once they quit for a while, even a single cigarette will make them gag.

[happygirl]

Smeech,

Reactions can vary from person to person, and even in one person (sometimes they react, other times they don't).

Celiac is referred to as a "medical chameleon" because of its different presentations. Some people are debilitated by their symptoms, others have absolutely no symptoms (they are referred to as "silent Celiac" or asymptomatic Celiac), and everyone else kind of falls in the middle, with a varity of symptoms. Its hard because there are very few Celiacs who have the "exact" same symptoms, and what used to be thought of as "classic" Celiac (diarrhea, failure to thrive, malnutrition) only accounts for a small portion of all Celiacs.

Do you have your records? If not, is there a way to get ahold of them (specifically, the Celiac blood test?)

Laura

[Smeech]

Think of smoking. If someone smokes a pack a day, a single cigarette won't make them sick even though smoking is affecting their health. Once they quit for a while, even a single cigarette will make them gag.

This makes sense, thank you.

Laura, I'm certain I can attain the results. I will call my doctor asap next week.

Thanks again!

Jon

[happygirl]

Get a hard copy (don't have them read them over the phone, they are infamous for misreading), get the results, post the tests, the results, and the reference ranges, and we'll have a go at it!

Laura

[mamabear]

When someone has celiac, can reaction be hit-or-miss? Example: eat all kinds of food (with gluten) 5 days in a row, feel okay, good bowel movements, but on the 6th day develop symptoms (eg. diarrhea)?

Without a doubt! Makes it hard to believe anything is wrong. I kept figuring I was getting a lot of bad chicken...or a GI bug....or anything "explainable". I do believe after the villi have blunted, it is less likely to have the normal runs in between(pun intended!! However......hydration status also plays in. If you are dehydrated and the colon is doing its job absorbing water, you can still have normal looking,but abnormal stools. Make sense??

[Smeech]

Without a doubt! Makes it hard to believe anything is wrong. I kept figuring I was getting a lot of bad chicken...or a GI bug....or anything "explainable". I do believe after the villi have blunted, it is less likely to have the normal runs in between(pun intended!! However......hydration status also plays in. If you are dehydrated and the colon is doing its job absorbing water, you can still have normal looking,but abnormal stools. Make sense??

Yes, definitely makes sense, thanks for the clarification.

I will do what Laura suggests (get a hard copy of the results and post) before I try re-testing... my insurance was much better 2 years ago than what I have now, and am a bit worried that they wouldn't cover as much of the cost on a procedure like an endoscopy/biopsy.

Thank you everyone!

Jon

[Smeech]

One important thing I forgot to mention:

On the original endoscopy/biopsy, it was determined that I have a hiatus hernia. I experienced a bit of heartburn at the time. I've been taking Prilosec OTC once a day (before dinner) ever since. Is there any link between hiatus hernias and celiac disease?

[mamabear]

One important thing I forgot to mention:

On the original endoscopy/biopsy, it was determined that I have a hiatus hernia. I experienced a bit of heartburn at the time. I've been taking Prilosec OTC once a day (before dinner) ever since. Is there any link between hiatus hernias and celiac disease?

Not to my knowledge. A hiatal hernia is a rupture of the opening between the chest and abdominal cavities. It is "mechanical" by nature. Celiac disease has an association with gastroesophageal reflux disease, but there are varying studies that emphasize its connection. You can have reflux with or without a hiatal hernia.

[Guhlia]

Throughout my entire life I had episodic diarrhea. I thought that I just caught stomach bugs a lot. It would never last for more than a day, generally it would only last 3-5 hours, but it would happen a few times a year. My main symptoms of Celiac, up until it got bad, were not GI in nature. My main symptoms included depression and other emotional issues, very minor neuropathy, RLS, excessive back neck and joint pain, migraines, forgetfulness (brain fog), poor balance, horrible night vision, muscle cramping and spasms, extreme irritability, pale pasty looking complexion, and short stature. I'm sure there are more symptoms that I haven't even connected to Celiac. I didn't get the GI symptoms until I had my first child. After I went gluten free ALL of these issues resolved themselves. I still get migraines here and there, but they're a lot less frequent now. I also still suffer with an RLS-like condition, but it's not life changing for me anymore. I feel pretty normal most of the time now and life is good.