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How Bad Is Cheating On The Gluten Free Diet Periodically
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Many doctors I've seen in my time seem to think it's ok for celiacs to cheat on the gluten free diet. Some say once every few months and others say once every year or couple of years.

How long would it take to heal? I've heard it's around 3-4 weeks from a single 5 gram dose of gluten.

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How often is it Ok to eat rat poison? Would you believe some experts over some doctors that do not know anything about Celiac? These are just two. There are more you can google.

Celiac info

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.E

N.

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Geez....those "doctors" don't know what they're talking about!! They are most definitely NOT experts, and you shouldn't listen to them.

I'm a perfect example of why you should never, ever ingest gluten. I, too, thought it might be okay to cheat occasionally, and I even read an article that said that after the small intestine heals, some people could actually eat gluten again. Was I wrong!! I cheated a few times by eating pizza...and after the third time, I became unable to absorb iron and had to have weekly intravenous infusions of iron. My boss wasn't too happy that I had to have a three-hour lunch every week in order to receive the infusions, and I had to use my vacation time. Eventually, I was diagnosed with cancer and the chemo miraculously healed my small intestine so that I no longer needed iron infusions (but no one wants to go through chemo, believe me).

A few years later, I accidentally ingested some gluten, and I ended up suffering from malabsorption of Manganese and Zinc so that my tendons and ligaments became floppy. As a result, both of my feet fractured a week apart. It took me eight months to figure out which nutrients I wasn't absorbing, and I spent that time limping around with a walking boot on the foot that hurt the most.

So, if you think you'd like to end up like me, sure, go ahead and cheat. Once the gluten is out of your body for a while, your immune system becomes strong again and reacts violently to the smallest ingestion of gluten. Want to test this concept? Believe me, you don't want to go there!

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Geez....those "doctors" don't know what they're talking about!! They are most definitely NOT experts, and you shouldn't listen to them.

I'm a perfect example of why you should never, ever ingest gluten. I, too, thought it might be okay to cheat occasionally, and I even read an article that said that after the small intestine heals, some people could actually eat gluten again. Was I wrong!! I cheated a few times by eating pizza...and after the third time, I became unable to absorb iron and had to have weekly intravenous infusions of iron. My boss wasn't too happy that I had to have a three-hour lunch every week in order to receive the infusions, and I had to use my vacation time. Eventually, I was diagnosed with cancer and the chemo miraculously healed my small intestine so that I no longer needed iron infusions (but no one wants to go through chemo, believe me).

A few years later, I accidentally ingested some gluten, and I ended up suffering from malabsorption of Manganese and Zinc so that my tendons and ligaments became floppy. As a result, both of my feet fractured a week apart. It took me eight months to figure out which nutrients I wasn't absorbing, and I spent that time limping around with a walking boot on the foot that hurt the most.

So, if you think you'd like to end up like me, sure, go ahead and cheat. Once the gluten is out of your body for a while, your immune system becomes strong again and reacts violently to the smallest ingestion of gluten. Want to test this concept? Believe me, you don't want to go there!

Was that just from a couple of gluten ingestions or were you keeping on eating gluten periodically while you had the infusions? (or was it just those three times?)

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It was just those few times. My body goes completely crazy if I accidentally ingest the smallest quantity of gluten now. One of my feet will never be the same, so even though I was a lifelong runner, running is no longer something I can enjoy.

Plenty of people on this forum can attest to how sick gluten makes them now that they've been gluten free for a while. Our bodies react as though it's the worst poison possible. When I cheated by eating the pizza, I really didn't have much of a physical reaction (I didn't feel sick or anything), but when my ferritin level bottomed out and I couldn't get it to increase no matter how much I supplemented with iron, I knew I was in trouble...and I knew why. I was extremely strict with my diet thereafter, but now even the slightest gluten contamination causes havoc with my body. I get a migraine, my eyes swell up, my nose gets stuffed up, I get a low-grade fever, my joints hurt terribly, I get awful diarrhea for three days, and I get foggy brained. It feels a lot like a very bad flu. Afterwards, I worry about which part of my small intestine got destroyed...and I wait for the fallout. Please don't consider cheating for even one minute. I know it's tempting, but it's so not worth it.

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Ugh! It's not like a weight loss diet. That's like the Dr. who said I needed to give my kid with food allergies a break and let her be a kid for two weeks on a vacation with her dad. I was like... Let her get sick for two weeks? She doesn't WANT to get sick! Some Drs. are clueless.

Yes at some point you will screw up and eat some wheat or something. You either won't read a label correctly or will get it through cross contamination or from eating something prepared by a well meaning but clueless person. But in my mind there is no need to do it on purpose.

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As much as I would love to disagree, they are right. I still have not 100% committed to permanent gluten-free. I get better and then relapse. It really is not worth it just in the symptoms you feel. Even worse for the issues you do not feel that will affect your life later.

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I don't think anybody on this forum is going to say cheating is ever okay. To me it's just not worth it because the symptoms are so severe. I sometimes wonder if I were symptomless if I'd have the discipline to be as vigilant. I would hope so just because I know how dangerous all that gluten is.

Plus, even with being super super careful, I feel like just going out into the world and eating at a restaurant, or grabbing fruit at a buffet table probably is zapping me a few times a year, so I'm not going to knowingly do it to myself.

Once you get your mind completely around this, and get into your gluten free routine, it's not so terrible. (Although I'm getting ready to get on a plane and mapping out my food for the flight and in case of emergency food...and well, sometimes it's a hassle. But I don't want to be sick on vacation)

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Physically your villi might be able to recover quickly from a glutening, say a couple of weeks. Maybe for your body it will take a couple of months. Maybe if you cheat once only half your intestine or something will react poorly, not all of it. So what, a couple of months with poorer food digestion, so what? You've probably lived with poor digestion for years.

The thing is, even if your body has a lighter reaction that someone else's, or if your villi heal quickly, or if your intestines make giant gaps to absorb everything and anything so that you won't be as nutrient deficient while your villi are damaged, FIRSTLY, you just don't know. Rather, you KNOW it will damage you, but you don't know how long it will take your body to heal and if your body can cope properly while it heals. Maybe it would be OK in the long run, but is it worth the risk? Rosetapper's story should be enough to scare the bejeebuz out of you to ever purposefully cheat on your diet! (it does to me) AND she was one of those people who didn't really even notice when she was eating pizza, not someone who feels like they're dying an hour after ingesting gluten. I feel you Rosetapper, and for me your story doesn't fall on deaf ears.

SECONDLY, you ARE going to ingest gluten at some point. It doesn't matter how careful you are, you will screw up or someone else will screw up for you. The doctor who says once a year is alright is basically telling you that you can only screw up ONCE A YEAR, not purposefully eat a bagel once a year. What I'm trying to say is that even if the doctor's right, you still can't ever purposefully eat gluten and expect to stay healthy, because you will ingest it at some point or another, (probably closer to the once a month mark than the once a year mark too), whether you know it or not.

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Something else those ignorant doctors are discounting: the fact that every time you even accidentally ingest gluten, you are triggerring an auto-immune response. Continue doing so and one of those times you will trigger the start of another auto-immune disease, one that can NOT be controlled completely with diet. So, if you want to develop Multiple Sclerosis, Sjorens Syndrome, Lupus, Type 1 Diabetes, Hashimotos....the list goes on and on.....then by all means, indulge. I know it is difficult to get your head around the fact of a lifelong diet in the beginning. It IS an inconvenience and it sucks. But that is the straw we drew. People with cancer or any of the other horrible diseases one can develop don't get to choose how their life will change either. They have to accept it. And you do too.

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if you have celiac, you can't have gluten. the end.

even if i accidentally ingest gluten, from who knows where because i am very careful, it takes weeks for my whole body to recover. from the joint pain, irritability, headache, extreme fatigue, etc, not to mention the severe reaction from my intestines, loss of appetite, hair loss, rash, IMMEDIATE weight loss, etc. and it's so depressing, too. i am still weak and puny from a 'mystery glutening' almost 2 weeks ago...

i will never purposely ingest gluten. i don't have time for it.

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I am with Karen and notme!

I view gluten as poison and a trace glutening sets me back for weeks.

This disease almost killed me.

It certainly killed my Dad. He was unDXED and suffered horrid gastro symptoms, h. pylori, ulcers, anemia requiring blood transfusions for 8 years, a heart valve transplant and kidney disease requiring dialysis. If only we had known; this simple gluten-free diet may have helped spare him some of that misery.

I lost 3 years of my life to this thing. Why would I purposefully ingest gluten and go back there?

Some celiacs go ahead and cheat and incur damage.

For what? wheat bread? what's the big deal?

You are the one that has to live with the consequences.

At some point, a celiac has to decided this "is what it is" and learn to cook and bake yummy gluten-free foods and get over it.

There are WORSE diseases we could have --and they can be yours if you mess with gluten. Read about lymphoma, diabetes, kidney disease, and heart disease, etc. and their association with untreated celiac disease. (meaning NOT adhering to the gluten-free diet)

Why would anyone screw around with that?

It's the hand we were dealt. Play it.

Stop negotiating and bargaining "how much will be okay".

The answer is NONE.

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My dad died of leukemia, I'm pretty sure due to undiagnosed Celiac. Were I symptomless, that would be enough to keep me on the straight and narrow.

My grandmother's sister, my mother's sister, my mother's father, my mother's cousin, my best friend's father, and my father all died of cancer. With all of that I have learned exactly how much doctors DON'T know. The best information you can get is from people who have long experience with something, and that's the people here. There is no safe gluten, and any doctor that says there is ought to be reported to Quackwatch.

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My grandmother died of cancer that may have been related to undiagnosed celiac. After a seven year battle she died. The last year of her life she pooped in a bag, weighed less than 100 pounds and kept loosing weight and was in constant pain. She died weighing less than 50 pounds in unimaginable pain. I really have no desire to die in pain with a poop sack.

My great grandmother fell when she was 80 and broke her hip. Maybe she was just old, maybe she had celiac related osteoporosis. I really don't feel like breaking any bones, certainly not a hip.

I met my husband and his family just in time to watch his sweet grandmother slowly slip away to dementia. Day by day a little more of her gone. During her good moments, terrified, knowing what was happening to her. She had many other symptoms of undiagnosed celiac. I don't want to slowly slip away, knowing it's happening and helpless to do anything, knowing I'll eventually be nothing but a burden to my family, unable to even recognize them.

My husband's mother has a type of cancer that can be related to celiac. It hasn't spread yet, but it will. Her hair is relatively short, it hides well how thin it gets when she goes back for chemo and it isn't awkward growing back. She spends weeks at a time barely able to do more than go to chemo when she gets the bad news. Again. This happens every few years. She knows that eventually the cancer will claim her, the doctors will say that this time nothing will help and to simply enjoy what time she has left. She lives on borrowed time, I don't want to.

Lots of people have shared what untreated celiac does. The only treatment for celiac is a gluten free diet, so when you cheat you are opening yourself to all of the possibilities of untreated, undiagnosed celiac. Every time you eat gluten on purpose you are playing Russian roulette. A slice of pizza can literally kill you. Not the day you eat it, but in much more horrific and unbearable ways. Think about it, is dying worth it?

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Hi ICM,

Welcome to the site! You sure picked a popular question for this thread! :) I'm sure you got the idea by now that people are against the whole cheat a little thinking of your doctors. There is a reason for that, or maybe quite a few actually.

Here is a post from a few years ago that seems relevant. My younger brother had a colostomy for a while so I know it is not so much fun. BackTalk doesn't visit often but did share her story as a warning.

Falling off the gluten-free wagon Post #37

Here is something to consider. IT WILL KILL YOU! I was gluten-free for almost 3 years. It was a struggle and it wasn't easy. I had had enough. I hauled my butt to Mc Donald's, ordered a quarter pounder and never looked back. It made me feel like crap but I stayed with it and got to the point where it didn't bother me. I went for another year and a half eating anything I wanted. About 4 months ago I started getting stomach cramps but was able to blow it off for a few weeks. I ended up on the floor of a pizza place with such bad cramps I was out of my mind with the pain. I was taken to the hospital, and thank God, just in time. My intestine perforated and blew out. They took out 2 feet of destroyed intestine. I am now the proud owner of a Colostomy. If you don't know what that is, look it up. Long story short, I poop in a bag now that is attached to my stomach. Again only by the grace of God mine can be reversed and I can be put back together in a few more months.I haven't posted on this forum in a long time but your post got to me. If you were told you need to go gluten-free, you better do it. If a bowl of cereal is worth having, keep eating it. You will enjoy the bag on your side when it gets bad enough. But what the heck, it may take years.Jess

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Then again, when I was young and used to smoke, people could show me a black lung and I would still think "Oh that won't happen to me!"

Scare tactics may not work for people.

We could tell stories all day long, but will it have any effect?

In the end, if you cheat with gluten, you're risking further health problems.

It's just that simple.

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Something else those ignorant doctors are discounting: the fact that every time you even accidentally ingest gluten, you are triggerring an auto-immune response. Continue doing so and one of those times you will trigger the start of another auto-immune disease, one that can NOT be controlled completely with diet. So, if you want to develop Multiple Sclerosis, Sjorens Syndrome, Lupus, Type 1 Diabetes, Hashimotos....the list goes on and on.....then by all means, indulge. I know it is difficult to get your head around the fact of a lifelong diet in the beginning. It IS an inconvenience and it sucks. But that is the straw we drew. People with cancer or any of the other horrible diseases one can develop don't get to choose how their life will change either. They have to accept it. And you do too.

I totally agree with MitziG. I was diagnosed with celiac disease at 38 years old, long enough for my celiac disease to trigger the start of another auto-immune disorder that I was just diagnosed with, Meniere's disease. For me, having celiac disease is a walk in a park on a sunny day compared to my Meniere's. I wish my celiac disease had been diagnosed MUCH earlier, if only to save me from developing another auto-immune disorder.

Cheating is NOT worth it.

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Welcome to the site! You sure picked a popular question for this thread! :) I'm sure you got the idea by now that people are against the whole cheat a little thinking of your doctors. There is a reason for that, or maybe quite a few actually.

IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened. Why we feel so ill from a small dose of gluten, while before we didn't feel that ill when consuming gluten regularly. Is feeling ill from being glutened a measure for the damage done?

It took years for most celiacs to get diagnosed, so it feels like it took years to get to a point that the villi were destroyed enough to be diagnosed.

Also, when already gluten free, to be diagnosed one must undergo a severe gluten challenge for many weeks and still risks a false negative.

I guess I'm not the only one wondering how much damage an occasional glutening really does.

Not that I plan or want to cheat, I'm very happy without gluten, but just wonder. Would be nice to find a scientific, non-emotional answer to this question.

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IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened.

Actually, there are MANY studies of people on a gluten-free diet for years who still have villous atrophy (or refractory sprue) upon repeat biopsy.

here is just one:

http://www.celiac.com/articles/710/1/Refractory-Sprue-by-Michelle-Melin-Rogovin-University-of-Chicago-Celiac-Disease-Program/Page1.html

"In a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues found that of 49 patients evaluated, only nine actually had refractory sprue—25 were found to have gluten contamination in their diets.

How can I reduce the chances of developing refractory sprue?

Researchers agree that most cases of refractory sprue develop in people who were diagnosed very late in life or who didnt follow the diet completely. Note that it doesn't matter how much gluten was consumed in these patients, they still developed refractory sprue."

The patients in these studies insist they adhere to the diet, but does this mean then that they are cheating occassionally or more likely, being glutened accidentally? --something ALL of us are likely to have happen many times throughout our lives.

Our point is, it's bad enough we get trace glutened all the time (despite our best efforts) but it is unwise to ADD to the problem by purposefully ingesting it.

That is just reckless, IMHO.

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Then again, when I was young and used to smoke, people could show me a black lung and I would still think "Oh that won't happen to me!"

Scare tactics may not work for people.

We could tell stories all day long, but will it have any effect?

In the end, if you cheat with gluten, you're risking further health problems.

It's just that simple.

I used to be a smoker too. I was lucky to be able to share some insight at a recent meeting focused on dealing with having a family member who is an addict. (of any sort) I remember pointing out that at the time that I was smoking, nothing else mattered. I knew it was bad for me, I knew I might die, I knew all the horrid things that could happen before I died. What mattered was when the next time was I could light up.

Sound stupid? It isn't any more stupid than having celiac and eating gluten. Both are bad for you, can kill you and will make you horribly sick before you die.

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Then again, when I was young and used to smoke, people could show me a black lung and I would still think "Oh that won't happen to me!"

Scare tactics may not work for people.

We could tell stories all day long, but will it have any effect?

In the end, if you cheat with gluten, you're risking further health problems.

It's just that simple.

Yes, scare tactics aren't too effective, especially on the young. I heard it said that telling young people that they will die if they drive drunk doesn't work, because they think it won't happen to them and they feel invincible. Instead tell them that they could end up in a wheelchair like Christopher Reeve and unable to hang out with their friends. That has more of an impact.

But it applies to a lot of things. I took birth control pills as a young, relatively healthy woman. The doc and the prescription insert said that users could develop a whole group of side effects, including kidney and liver tumors. Did I think it would happen to me? NO. Did it? YES. (Benign at present, thankfully.) Would I go back and change my decision now? Maybe, but I was able to not worry about unplanned pregnancy and have two very well-planned, healthy babies exactly when I wanted them and not when I didn't. My friends who were not on BCPs were unexpectedly parents when they didn't want to be.

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IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened. Why we feel so ill from a small dose of gluten,

Actually, there are MANY studies of people on a gluten-free diet for years who still have villous atrophy (or refractory sprue) upon repeat biopsy.

This is a completely different issue to "what really happens on an occasional glutening"

Please don't get emotional about it. It is a valid question. I'm just curious what happens in case I get accidentally glutened.

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This is a completely different issue to "what really happens on an occasional glutening"

Please don't get emotional about it. It is a valid question. I'm just curious what happens in case I get accidentally glutened.

I gave this, impersonal, non-emotional & credible link at the beginning. Here's a pertinent excerpt:

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten."

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets6_Treatment.pdf

and another:

": Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis."

http://www.celiacdiseasecenter.org/A_Patients/A02-FAQ.htm

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I gave this, impersonal, non-emotional link at the begining. Here's a pertinent excerpt:

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten."

http://www.curecelia...6_Treatment.pdf

I've seen this document and although it is coming from a very reliable source, there is no scientific reference to their statement that it "can" damage the intestine.

Has nobody found any study yet about the effects of occasional glutening?

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Has nobody found any study yet about the effects of occasional glutening?

I highly doubt one exists. It would be very difficult to do in a meaningful way. You would need a significant number of people with celiac disease, over a long period of time, with a "control" segment who are 100% successful at keeping totally gluten-free, for comparison. Given reality, I don't know how you could verify the control group's compliance.

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    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
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