Specifics About Celiac Disease Symptoms

[alice m]

I searched the last few questions to see if my questions had already been asked and answered but didn't find a similiar question. I am sorry if I overlooked a similiar question.

My questions:

1. Are all reactions to gluten that cause GI side effects (like bloating and diarrhea) auto-immune mediated? Or is it possible to have a reaction that isn't an auto-immune and all you have to do is reduce your gluten intake to be symptom free rather than going 100% gluten free like Celiac disease requires?

2. Is it possible to have Celiac disease and have a high tolerance to gluten so that an occasional bagel or slice of pizza causes no reaction other than possibly a bit of bloating? Can one's reaction to gluten be periodic - one day no reaction but trying gluten a couple of weeks later does cause sudden, painless diarrhea.

3. Is there a typical time frame that diarrhea related to an auto-immune reaction to gluten occurs in? Is it typically immediately after eating gluten, say within 30 minutes? Can it be 24 hours later?

I am trying to figure out my own symptoms and diagnosis. I am a doctor, an internist, but I was amazed at how little I actually knew about the practical aspects of celiac disease when I started having symptoms myself. I have done extensive reading into the disease and now know more than some gastroenterologists that I know. But there are certain topics that are not explained in the medical literature - such as the timing of the dirrhea and whether the symptoms can be sporadic. So I was hoping someone on the forum might be able to shed some light.

Finally, does anyone know of a good GI doc in the triad area of NC? My blood work was negative, so I want to find a doctor willing to persue a biopsy even with negative antibody levels rather than treat me like a hypochondriac.

Thanks so much!

[ravenwoodglass]

I searched the last few questions to see if my questions had already been asked and answered but didn't find a similiar question. I am sorry if I overlooked a similiar question.

My questions:

1. Are all reactions to gluten that cause GI side effects (like bloating and diarrhea) auto-immune mediated? Or is it possible to have a reaction that isn't an auto-immune and all you have to do is reduce your gluten intake to be symptom free rather than going 100% gluten free like Celiac disease requires?

Whether you are celiac or gluten intolerant (what doctors often call those with negative blood tests or symptoms other than GI related) you are still forming antibodies and the need to be strict with the diet is the same for both.

2. Is it possible to have Celiac disease and have a high tolerance to gluten so that an occasional bagel or slice of pizza causes no reaction other than possibly a bit of bloating? Can one's reaction to gluten be periodic - one day no reaction but trying gluten a couple of weeks later does cause sudden, painless diarrhea.

Yes but you are still doing damage. There are some with asymptomatic celiac disease that are still found to have totally destroyed villi. There are also folks who have no GI symptoms but have another organ like the brain, liver or joints that are attacked instead.

3. Is there a typical time frame that diarrhea related to an auto-immune reaction to gluten occurs in? Is it typically immediately after eating gluten, say within 30 minutes? Can it be 24 hours later?

That can vary from person to person. Some react immediately some can react days later.

I am trying to figure out my own symptoms and diagnosis. I am a doctor, an internist, but I was amazed at how little I actually knew about the practical aspects of celiac disease when I started having symptoms myself. I have done extensive reading into the disease and now know more than some gastroenterologists that I know. But there are certain topics that are not explained in the medical literature - such as the timing of the dirrhea and whether the symptoms can be sporadic. So I was hoping someone on the forum might be able to shed some light.

Finally, does anyone know of a good GI doc in the triad area of NC? My blood work was negative, so I want to find a doctor willing to persue a biopsy even with negative antibody levels rather than treat me like a hypochondriac.

Gee a doctor concerned about being treated like a hypochondriac! I thought that only happened to us regular folks. Seriously though collect some info on celiac in peer reviewed studies, the NIH has some info as well as Pubmed and others, in particular stuff that states the high rate of false negatives with testing. Then take it with you to the appointment and demand a biopsy. Do be aware that the biopsy also has a high rate of false negatives so the day the test is done go on the diet for a couple of months strictly. Your body can give you the answer. I hope you feel better soon.Thanks so much!

[eatmeat4good]

How refreshing to see your post. I wish all Dr.'s would read this cite.

Sorry you are having symptoms though.

I want to address your questions because I am one who had sporadic and intermittent episodes of symptoms in all three categories, neurological, dermatological, and gastrointestinal. Yes, you can react suddenly and severely at times and think you have the flu or perhaps food poisoning. I have had many episodes prior to diagnosis over the course of many years. Sometimes I would go months without a reaction and then get severe symptoms of depression and skin rash that would eventually go away. Or migraine headaches that were intermittent or at times severe. However, the antibodies continue to build in your system until your body is overwhelmed. It wasn't until many years of this disease that I got to the point of having gastrointestinal problems.

Everyone must be a bit different regarding reactions to gluten.

I react within an hour with migraine headache, severe nausea, bad mood, anxiety and the next day get the gastro symptoms.

My son, gets gastro symptoms within an hour and bad mood and lousy feeling for several days after.

I hope you find a Dr. who believes you and is willing to test you.

It is horrible to be treated like a hypochondriac when you are terribly ill.

I hope you will try gluten free even if you don't get the testing you want.

I learned the hard way that cross contamination is very serious. We get more sensitive to gluten when we are off of it for a time.

Best of luck to you.

Your patients are fortunate to have a Dr. like you who has read and educated yourself. You won't be handing them Xanax for these problems like my Dr.'s did.

[Lisa]

I searched the last few questions to see if my questions had already been asked and answered but didn't find a similiar question. I am sorry if I overlooked a similiar question.

My questions:

1. Are all reactions to gluten that cause GI side effects (like bloating and diarrhea) auto-immune mediated? Or is it possible to have a reaction that isn't an auto-immune and all you have to do is reduce your gluten intake to be symptom free rather than going 100% gluten free like Celiac disease requires?

2. Is it possible to have Celiac disease and have a high tolerance to gluten so that an occasional bagel or slice of pizza causes no reaction other than possibly a bit of bloating? Can one's reaction to gluten be periodic - one day no reaction but trying gluten a couple of weeks later does cause sudden, painless diarrhea.

3. Is there a typical time frame that diarrhea related to an auto-immune reaction to gluten occurs in? Is it typically immediately after eating gluten, say within 30 minutes? Can it be 24 hours later?

I am trying to figure out my own symptoms and diagnosis. I am a doctor, an internist, but I was amazed at how little I actually knew about the practical aspects of celiac disease when I started having symptoms myself. I have done extensive reading into the disease and now know more than some gastroenterologists that I know. But there are certain topics that are not explained in the medical literature - such as the timing of the dirrhea and whether the symptoms can be sporadic. So I was hoping someone on the forum might be able to shed some light.

Finally, does anyone know of a good GI doc in the triad area of NC? My blood work was negative, so I want to find a doctor willing to persue a biopsy even with negative antibody levels rather than treat me like a hypochondriac.

Thanks so much!

1:By definition Celiac Disease is an autoimmune disease trigger by gluten. It is often referred as a spectrum disorder under the envelope of Gluten Intolernace - Celiac - Gluten Allergy.

2. Yes and everyone's reaction is different. The lack of reaction is no indication that internal damage is not occurring. Yes, reaction can be sporadic.

3.Reaction time to vary between with the hour to twenty four hours or more.

Oh, just noticed the NC inquiry...will check into that.

[mushroom]

Ravenwoodglass answered your questions exactly as I would have.

I am one of the self-diagnosed hypochondriac IBS kind of patients, and I believe this is probably because my reactions to gluten were not as severe as my reactions to lactose (I KNEW I was intolerant to that) and also because although I gave up eating pasta because it bothered me, bread and pizza were my comfort foods, so it did not make sense that gluten was an issue for me. It was not until I gave it up in hopes of a positive impact on my psoriatic arthritis (having met someone who treated his ankylosing spondylitis with a gluten free diet) that I discovered I was totally gluten intolerant, as well as a lot of other things intolerant. While doctors often think that their patients are over-reacting and over-describing their symptoms, many of them are in fact under-describing so as not to sound like a hypochondriac

[rosetapper23]

Since you've done a lot of research, perhaps you've read that gluten sensitivity is very common (thought to affect 30-40% of Americans). This may be why you had a negative blood test; however, as you know, the tests for celiac are notoriously unreliable. Since there are actually four different blood tests for celiac, I'm wondering if you have had all four performed(?) If not, this may be a good place to start.

In my family, my mother, uncle, son, daughter, and I all have celiac; however, we all have a different level of tolerance. For years, my mother was able to eat sourdough bread on occasion and not get sick. I can say the same for the occasional slice of pizza. However, over time we became so very sensitive to gluten, we began to experience immediate symptoms of diarrhea, headache, and flu symptoms within an hour or so of ingesting gluten. Everyone is different in this regard, but it seems that the longer we forgo gluten, the more sensitive we become. Perhaps your delayed response is normal...but going on a strict gluten-free diet for a year or longer may leave you much more sensitive and reactive to gluten.

I know that, as a doctor, you want exacting information, but what it really comes down to, is do you react poorly to ingestion of gluten? If the answer is yes, then you need to avoid it. If you're having a biopsy and it shows that there's no damage to your villi, then you may wish to enjoy an occasional indiscretion without worrying about permanent damage. However, if you don't enjoy feeling sick, stop eating gluten entirely. That's the bottom line.

[AmyE]

I get a migraine about 3 hrs after even the smallest amour of gluten----gut problems start the next day---go figure!?!?! Good luck!!!!

[Marlie]

I searched the last few questions to see if my questions had already been asked and answered but didn't find a similiar question. I am sorry if I overlooked a similiar question.

My questions:

1. Are all reactions to gluten that cause GI side effects (like bloating and diarrhea) auto-immune mediated? Or is it possible to have a reaction that isn't an auto-immune and all you have to do is reduce your gluten intake to be symptom free rather than going 100% gluten free like Celiac disease requires?

I have talked with several individuals who are not diagnosed as Celiac but gluten intolerant and they cannot eat any gluten without getting GI symptoms. They have to follow the same diet as strictly as those who are Celiac to feel well. On the other hand I have also talked with a Celiac who does cheat and does not have symptoms after ingesting Gluten.

2. Is it possible to have Celiac disease and have a high tolerance to gluten so that an occasional bagel or slice of pizza causes no reaction other than possibly a bit of bloating? Can one's reaction to gluten be periodic - one day no reaction but trying gluten a couple of weeks later does cause sudden, painless diarrhea.

I would think so, which is why it may take people so long to get diagnosed. My teen only started suffering from severe GI symptoms that did not include Diarrhea several weeks before diagnosis.

Bloating is only now only noticeble after being on a GI diet and there has been cross contamination. I must say prior to 2 months ago GI symptoms were unusual in my teen.

3. Is there a typical time frame that diarrhea related to an auto-immune reaction to gluten occurs in? Is it typically immediately after eating gluten, say within 30 minutes? Can it be 24 hours later?

People with both Celiac or Gluten Intolerance can become ill with a variety of symptoms within like 20 minutes or a few days. Everyone has different symptoms and many are not necessarily GI and have different reaction times.

I am trying to figure out my own symptoms and diagnosis. I am a doctor, an internist, but I was amazed at how little I actually knew about the practical aspects of celiac disease when I started having symptoms myself. I have done extensive reading into the disease and now know more than some gastroenterologists that I know. But there are certain topics that are not explained in the medical literature - such as the timing of the dirrhea and whether the symptoms can be sporadic. So I was hoping someone on the forum might be able to shed some light.

Finally, does anyone know of a good GI doc in the triad area of NC? My blood work was negative, so I want to find a doctor willing to persue a biopsy even with negative antibody levels rather than treat me like a hypochondriac.

Thanks so much!

[ravenwoodglass]

If you're having a biopsy and it shows that there's no damage to your villi, then you may wish to enjoy an occasional indiscretion without worrying about permanent damage. However, if you don't enjoy feeling sick, stop eating gluten entirely. That's the bottom line.

I personally don't think this is good advice as it can give people the idea that it is okay to cheat on the diet. For one thing endoscopies can miss the damage if damage is patchy or in an area the scope cannot reach. Some doctors also do not recognise the changes that occur before full villi destruction or do but will tell us to keep eating gluten and come back in a year to see if we are now damaged enough for them to say 'okay your villi now are gone here is your diagnosis'. Meanwhile other organs are under attack. For another celiac and gluten intolerance both cause autoimmune antibodies and occasionally eating gluten if you have either can keep the antibodies active. There are some folks that have no GI symptoms at all but have other organs that they may not realize are being compromised.

The choice to stay gluten free and not cheat is of course an individual decision and only that person can make.

[rosetapper23]

You're right, Ravenwoodglass, and I should have worded my response differently. What I meant was that if it is determined that the poster definitely does not have celiac and suffers from diarrhea only as a symptom, she could probably cheat once in a while if she's willing to put up with the diarrhea. However, with the tests and biopsies being so unreliable, it IS much more sensible to simply give up gluten completely.

Thanks for the catch--I don't want this person to be harmed.