Treatment For Celiac

[Joe Hoffman]

On August 5th 2007 I started having extreme diarrhea, stomach cramping, bloating, and nausea/vomitting. Since August 5th I have gone without a normal bowel movement, just straight chronic diarrhea. Four doctors and three hospital visits later I have now been diagnosed with Celiac Disease.

The initial blood work and biopsy was negative, but my new doctor was so convinced it was Celiac he did a second battery of blood work and it came back positive for Celiac.

He started me on the gluten free diet in late October, but after the biopsy came back negative the doctor that did the biopsy told me I could get off the diet and enjoy Thansgiving dinner with my family.

After just four days off the diet my intestines were going crazy. The spasms and cramping was at an all time high. It reminded me of when I had a kidney stone. The diarrhea was like a gallon of pure liquid coming out in one second, twenty to twenty five times a day.

I have been back on the diet for two weeks now and today is the first day I have seen any sign of improvement. I only went eleven times today, but the cramping is still really bad.

Needless to say I can not, and will not leave my home for fear of crapping my pants in public.

I tried going back to work August 22nd and I went in my pants in front of a customer and one of my employees. I haven't been back since.

My questions are:

1. When you stop the diet is it always that bad of a reaction?

2. How long does it take for the diarrhea to stop?

3. Does the cramping and bloating ever completely stop.

4. What are the odds of returning to a normal, extremely active life.

I'm 56 and I have gone from 290+lbs down to 255. The problem is my face arms and legs are much skinnier, but my stomach is actually much larger.

Any help would be sincerely appreciated.

Joe

[RiceGuy]

Wow, sorry that you're having such a rough time. Be assured however, that many of us go through all sorts of stuff as a result of Celiac.

To address your questions:

1. When you stop the diet is it always that bad of a reaction?

Firstly, I don't know what you've been told, but you can't ever stop the diet. Once gluten intolerant, always gluten intolerant. And yes, the reaction from a "glutening" will likely be more pronounced after you've been gluten-free for awhile.

2. How long does it take for the diarrhea to stop?

This varies from person to person, as do most things. For some it is just the opposite reaction - that is constipation.

3. Does the cramping and bloating ever completely stop.

Chances are pretty good I'd think, though it seems relief of symptoms generally comes sooner when Celiac is caught earlier rather than later.

4. What are the odds of returning to a normal, extremely active life.

It depends greatly on how progressed the damage got before being addressed. Many find nearly full recovery within reach after a few weeks or months, while others (including myself) are still struggling after years of being meticulously gluten-free.

I'm sure others will have some similar stories to relate. A common piece of advice is to just hang in there and give your body time to heal. It does get easier, and you will feel better over time.

HTH

[kenlove]

Hi Joe,

I had to read your message twice to make sure it wasnt me that wrote it. Went through damn near the same thing a few years ago. I'm also 56 went from 260 to 220 which was ok except for the dry heaves and runs all day.

My pants went from 42 to 36 but the stomach is bigger than ever and I get teased about a beer belly all the time.

never was much of a beer drinker. After 2 years my weight is back up -- darn it.

Took them 6 months to finally figure me out. Them meaning 5 different docs here in Hawaii and my old doc in Chicago.

I'm extremely sensitive to any gluten -- My wife cannot bake here at all, any flour in the air sets the whole thing in motion again. Hidden things in something I eat does it too.

For me the only time the cramping and bloating stops is when I can go 3 or 4 days without any exposure to gluten.

Also I found that I cant eat after 5 at night -- when I do my stomach get scrambled again and the next day is miserable. I"m told it takes about 2 years with no trouble or gluten exposure before we can get back to normal without the constant problems but its something we always have to watch out for.

I never had any trouble or allergy to anything until this hit me.

Anyway I feel your pain -- literally

I have a feeling there are many others....

Ken

On August 5th 2007 I started having extreme diarrhea, stomach cramping, bloating, and nausea/vomitting. Since August 5th I have gone without a normal bowel movement, just straight chronic diarrhea. Four doctors and three hospital visits later I have now been diagnosed with Celiac Disease.

The initial blood work and biopsy was negative, but my new doctor was so convinced it was Celiac he did a second battery of blood work and it came back positive for Celiac.

He started me on the gluten free diet in late October, but after the biopsy came back negative the doctor that did the biopsy told me I could get off the diet and enjoy Thansgiving dinner with my family.

After just four days off the diet my intestines were going crazy. The spasms and cramping was at an all time high. It reminded me of when I had a kidney stone. The diarrhea was like a gallon of pure liquid coming out in one second, twenty to twenty five times a day.

I have been back on the diet for two weeks now and today is the first day I have seen any sign of improvement. I only went eleven times today, but the cramping is still really bad.

Needless to say I can not, and will not leave my home for fear of crapping my pants in public.

I tried going back to work August 22nd and I went in my pants in front of a customer and one of my employees. I haven't been back since.

My questions are:

1. When you stop the diet is it always that bad of a reaction?

2. How long does it take for the diarrhea to stop?

3. Does the cramping and bloating ever completely stop.

4. What are the odds of returning to a normal, extremely active life.

I'm 56 and I have gone from 290+lbs down to 255. The problem is my face arms and legs are much skinnier, but my stomach is actually much larger.

Any help would be sincerely appreciated.

Joe

[~alex~]

Hey Joe,

It sounds like your Celiac disease came on suddenly, as was the case with me. I felt like I went from the picture of health to death's doorstep in less than a month. I too felt scared and confused and like I would never be healthy again. I had resigned myself to living in the bedroom and bathroom for the rest of my life. I was lucky to be diagnosed with Celiac quite quickly and from what I gather from your post your diagnosis was not too delayed either. We are the lucky ones and I think the relative speediness of your diagnosis will greatly increase your chances of a full recovery.

I did not feel much better immediately when I went gluten-free -- still chronic diarrhea and pain -- but I slowly and steadily improved. Almost a year after the fact, I feel almost 100% healthy most of the time. I plan on getting to 100% and being just as active or more so than I was before becoming ill. It is probably quite likely that carefully following the gluten-free diet will result in the dramatic decrease and hopefully complete resolution of your symptoms.

As the previous poster mentioned, despite what the doctor told you, it is never a good idea to knowingly deviate from the gluten-free diet. You will likely make a few mistakes now and then, but doing your utmost to stay gluten-free is the most important factor in your recovery.

So to specifically answer your questions:

1. Yes, it is always a bad reaction when you go off the diet. Even if you don't have symptoms you are damaging your villi.

2. For me it took about 3-4 months to stop having significant diarrhea every day

3. For me the cramping and bloating has completely gone away

4. I think the odds are great for being able to live a normal active, healthy life!

[Ursa Major]

Joe, your doctor didn't know what he was talking about. A positive biopsy will confirm celiac disease, but a negative one can't rule it out. The reason is, that there are so many false negatives with celiac disease. Your small intestine is 22 feet long, and usually villi damage is patchy. Even with 10 biopsies taken (which I doubt your GI did), it is still hit or miss to actually biopsy damaged spots.

It is advisable for you to eliminate all dairy and soy for at least a few months while starting the gluten-free diet. For many people that still have diarrhea after starting the gluten-free diet and aren't really getting better, dairy and soy are what is preventing healing.

I finally figured out I was gluten intolerant (don't have an official diagnosis) when I was 52, two years ago, after having severe watery D for six months. But really, I had symptoms all my life, they were just not as obvious.

Because of diagnosis so late in life, my intestines likely have some irreversible damage. For the first six months of being gluten-free, I was completely unable to tolerate anything raw. No raw vegetables or fruits, I had to cook everything well. Otherwise I would get stomach cramps within minutes, and diarrhea within half an hour. I still can only tolerate limited amounts of raw foods (I don't eat salads more often than every second day).

Also, those replacement gluten-free foods (pasta, breads, cookies etc.) are very hard on the stomach, and should be avoided for the first little while if you don't seem to be getting better.

You will need to replace your toaster and plastic colander, since you can't clean them well enough to be safe. The same goes for wooden spoons and wooden cutting boards, as well as scratched no-stick pots and pans.

Check all your personal care products (shampoo, conditioner, lotion, soap, toothpaste etc.) for gluten (wheat germ oil, barley extract, oat bran), and replace the ones that contain gluten with gluten-free ones. One brand you can feel safe with is Dove.

I hope you feel better soon.

[kenlove]

Thanks much for posting this info. I had wondered why I felt like garbage after a salad for the past 2 years. The fruit does not seem to bother me but the greens sure do. My biopsy less than 2 years ago showed the vili were almost gone. I used to eat big salads for dinner each night which i've had to stop. Guess I still need to figure out foods I can eat without pain a few hours later -- besides cheese and yoghurt.

Ken

Because of diagnosis so late in life, my intestines likely have some irreversible damage. For the first six months of being gluten-free, I was completely unable to tolerate anything raw. No raw vegetables or fruits, I had to cook everything well. Otherwise I would get stomach cramps within minutes, and diarrhea within half an hour. I still can only tolerate limited amounts of raw foods (I don't eat salads more often than every second day).

[Ursa Major]

Ken, I am glad I am able to put some of this into perspective for you. Most people think that just eliminating gluten will easily get them well. They don't realize that your intestines are very badly damaged, and need to be treated with tenderness to heal.

Here is an analogy that came to me today, that you guys might appreciate, concerning endoscopic biopsies:

Your small intestine has about the same surface area as a football field, due to its many creases and the millions of little villi (unless those are gone, but the surface is still quite large even then). Unless the damage is very severe and the villi are completely gone, the damage is usually not visible to the naked eye, but can only be seen under a microscope.

Okay, imagine a football field, with real grass. The grass looks great, but you know that a bug infestation is there, of bugs so tiny you can't see them with the naked eye. You need to prove it, so the government will pay to have this grass treated, before it will die. You also realize that usually this infestation is patchy and likely only affects little islands as of yet, with most of the grass still being perfectly healthy.

So, you go out and randomly take two to five samples for the lab (normal biopsies are no more than that) from this large field, hoping you will actually take the samples from a damaged area. How likely do you think it will be that you will succeed? What are the odds of you taking samples from areas that aren't yet affected, looking at the tiny samples, and the large field you have taken them from?

Right. That is how likely it is that the GI actually takes samples from damaged areas, unless the damage is so bad that the villi are completely gone already. That is why there are so many false negatives. Unfortunately, there are still plenty of GIs that claim that you can't have celiac disease if the biopsy is negative, and tell their patients that it is okay to eat gluten.

Fortunately, there are now some GIs who understand, and tell their patients who've had a positive blood test, but a negative biopsy, to try the diet anyway. Because the diet response is a valid test, too (in fact, the most valid of them all).

[Joe Hoffman]

I just want to thank you guys for taking the time to respond to my questions.

Like I said I'm 56 and this has really been a nightmare.

Words can't explain what your posts mean to me.

In 2004 I was inducted into the American Football Association's Hall of Fame. Each year since I look forward to attending each induction.

Here's a message that was left on my phone last Saturday:

"Joe, help us out here, we are trying to understand how a guy that played in a National Championship game with three broken ribs can't make it to a Hall of Fame induction because of a little diarrhea."

If they only knew!

Thanks again,

Joe

[Fiddle-Faddle]

Joe, everyone else answered all your questions, but I wanted to add some questions of my own for you:

1) What are you eating and drinking now? What is your typical day's menu?

Maybe we can help by offering suggestions on what you should be eating, and maybe there are some things that you are eating that might be preventing your gut from healing.

2) By any chance that this sudden onset in August was preceded by either a vaccine (too early for flu shots in August, but you might have had a tetanus booster) or dental work? That could indicate mercury toxicity, which can cause gluten intolerance and a host of other problems.

3) Lyme disease is another increasingly common cause of gluten intolerance symptoms. There are 2 full-time threads here full of celiacs who have also tested positive for Lyme disease. Contrary to what the doctors are taught, something like half of all patients who test positive for Lyme actually develop that famous "bull's-eye rash," and most are unaware of having been bitten by a tick in the first place. And, as ticks travel so easily (on people's clothes, in cars, planes, etc.), there is no such thing as a Lyme-safe area.

Oops, that was supposed to be a question, wasn't it? I guess I just wanted to make sure that you knew about the possibility of Lyme, just in case down the road your symptoms don't resolve, then you might want to look into it.

My experience is a bit different from Ursa's--if I DON'T have a daily salad, my digestion is not good. My system apparently craves veggies and fruit. I do agree about the gluten-free substitutes (breads, pizza crusts, cookies, etc.)--stay away from them (and dairy, too) for at least a few months. Some people here can't have rice and potatoes, too.

Unfortunately (or do I mean fortunately?), you are on your own for this--the doctors can't tell you what foods will and won't work (besides for gluten, that is); you'll have to pretty much do an elimination diet to figure it out. But cheer up--there are many, many people on this board with dozens of years of experience each, and you'll get lots of feedback and advice--with no copay or paperwork!

Hope you feel better very soon.

[ravenwoodglass]

Thanks much for posting this info. I had wondered why I felt like garbage after a salad for the past 2 years. The fruit does not seem to bother me but the greens sure do. My biopsy less than 2 years ago showed the vili were almost gone. I used to eat big salads for dinner each night which i've had to stop. Guess I still need to figure out foods I can eat without pain a few hours later -- besides cheese and yoghurt.

Ken

On the salad issue, I had the same problem and one day made a salad without any lettuce of any kind. Raw yellow and green squash, seedless cucumbers, shredded carrots etc. I find that I can tolerate a 'saladless' salad okay as long as the dressing is non gluten grain vinager derived. For a quick lunch a small can of chichi beans or a little meat and you have a meal. I also have found if I peel raw veggies that can help a bit too, although you do lose some of the nutrients when you do so.

[kenlove]

THanks again Ursa Major,

As agriculture research I can appreciate the analogy. It is also good to know that there are reasons I have trouble with foods that are gluten free after 2 years. Celiac is not common in Hawaii which I guess its why it took them 6 months to figure out what was wrong with me.

Take care

Ken, I am glad I am able to put some of this into perspective for you. Most people think that just eliminating gluten will easily get them well. They don't realize that your intestines are very badly damaged, and need to be treated with tenderness to heal.

Here is an analogy that came to me today, that you guys might appreciate, concerning endoscopic biopsies:

Your small intestine has about the same surface area as a football field, due to its many creases and the millions of little villi (unless those are gone, but the surface is still quite large even then). Unless the damage is very severe and the villi are completely gone, the damage is usually not visible to the naked eye, but can only be seen under a microscope.

Okay, imagine a football field, with real grass. The grass looks great, but you know that a bug infestation is there, of bugs so tiny you can't see them with the naked eye. You need to prove it, so the government will pay to have this grass treated, before it will die. You also realize that usually this infestation is patchy and likely only affects little islands as of yet, with most of the grass still being perfectly healthy.

So, you go out and randomly take two to five samples for the lab (normal biopsies are no more than that) from this large field, hoping you will actually take the samples from a damaged area. How likely do you think it will be that you will succeed? What are the odds of you taking samples from areas that aren't yet affected, looking at the tiny samples, and the large field you have taken them from?

Right. That is how likely it is that the GI actually takes samples from damaged areas, unless the damage is so bad that the villi are completely gone already. That is why there are so many false negatives. Unfortunately, there are still plenty of GIs that claim that you can't have celiac disease if the biopsy is negative, and tell their patients that it is okay to eat gluten.

Fortunately, there are now some GIs who understand, and tell their patients who've had a positive blood test, but a negative biopsy, to try the diet anyway. Because the diet response is a valid test, too (in fact, the most valid of them all).

[marciab]

Joe,

I had the type of "D" you mentioned. I'm sure you've tried Imodium, but I'd have to take 3 of these at once to stop my "D" if I had to get out of the house. I'd also stop all liquids. No sips of water even.

Not that I'd recommend doing this on a regular basis, but sometimes you have to get out. Imodium is the best "D" medication because it actually stops the spasming too. You might want to give this a try. The downside to this is possible constipation afterwards. You may want to run this past your doctor too. At that time, I didn't have an "intelligent" GI , so I couldn't ask.

Once I eliminated gluten this part was over. I still get it back for at least one day everytime I get glutened though.

FWIW: I've found that if I want to eat salads I have to use a digestive enzyme. I use ground dried papaya seeds that I make myself. I tried the store bought ones and they never worked for me, but that was prior to my gluten free diet.

Also, a friend of mine was telling me that she took several probiotics every hour and it eliminated her "D". I'm finding that probiotics will stop my stomach from rumbling if I've gotten into something it didn't like too .... I use a good one from the refrigerated section of my local health food store, but I used to use plain kefir.

Marcia

[kenlove]

I do miss the romain and other lettuce but I'l give it a try. Never cold eat much meat but since being diagnosed have had more than I had in the past 30 years. Beans have not given me any trouble. Other salads like carrot and gobo (burdock)

are ok too. Guess it just takes more time to sort things out.

thanks again

Ken

On the salad issue, I had the same problem and one day made a salad without any lettuce of any kind. Raw yellow and green squash, seedless cucumbers, shredded carrots etc. I find that I can tolerate a 'saladless' salad okay as long as the dressing is non gluten grain vinager derived. For a quick lunch a small can of chichi beans or a little meat and you have a meal. I also have found if I peel raw veggies that can help a bit too, although you do lose some of the nutrients when you do so.

[kenlove]

Sure hope you can make it Joe. I didnt eat for 2 days when I had to go to an event last year.

The diarrhea for me was not as bad as the dry heaves. My system rejected everything at times and I threw up 2 or 3 times a day for 6 months.

Good luck!

y

I just want to thank you guys for taking the time to respond to my questions.

Like I said I'm 56 and this has really been a nightmare.

Words can't explain what your posts mean to me.

In 2004 I was inducted into the American Football Association's Hall of Fame. Each year since I look forward to attending each induction.

Here's a message that was left on my phone last Saturday:

"Joe, help us out here, we are trying to understand how a guy that played in a National Championship game with three broken ribs can't make it to a Hall of Fame induction because of a little diarrhea."

If they only knew!

Thanks again,

Joe

[Ursa Major]

Ravenwoodglass, I am intolerant to salicylates (Aspirin being 100% salicylic acid and being the worst offender), meaning that all fruits except for pears, and most vegetables are out for me. Including the ones that have those enzymes.

I also can't use Immodium, it makes my diarrhea worse, because I am intolerant to it.

What I found works for a diarrhea attack is activated charcoal (make sure you read the label, some have wheat in them). It binds the poison that is making you sick. But don't use it too often, because it also binds essential nutrients, stopping them from being absorbed.

[Joe Hoffman]

Joe, everyone else answered all your questions, but I wanted to add some questions of my own for you:

1) What are you eating and drinking now? What is your typical day's menu?

Maybe we can help by offering suggestions on what you should be eating, and maybe there are some things that you are eating that might be preventing your gut from healing.

2) By any chance that this sudden onset in August was preceded by either a vaccine (too early for flu shots in August, but you might have had a tetanus booster) or dental work? That could indicate mercury toxicity, which can cause gluten intolerance and a host of other problems.

3) Lyme disease is another increasingly common cause of gluten intolerance symptoms. There are 2 full-time threads here full of celiacs who have also tested positive for Lyme disease. Contrary to what the doctors are taught, something like half of all patients who test positive for Lyme actually develop that famous "bull's-eye rash," and most are unaware of having been bitten by a tick in the first place. And, as ticks travel so easily (on people's clothes, in cars, planes, etc.), there is no such thing as a Lyme-safe area.

Oops, that was supposed to be a question, wasn't it? I guess I just wanted to make sure that you knew about the possibility of Lyme, just in case down the road your symptoms don't resolve, then you might want to look into it.

My experience is a bit different from Ursa's--if I DON'T have a daily salad, my digestion is not good. My system apparently craves veggies and fruit. I do agree about the gluten-free substitutes (breads, pizza crusts, cookies, etc.)--stay away from them (and dairy, too) for at least a few months. Some people here can't have rice and potatoes, too.

Unfortunately (or do I mean fortunately?), you are on your own for this--the doctors can't tell you what foods will and won't work (besides for gluten, that is); you'll have to pretty much do an elimination diet to figure it out. But cheer up--there are many, many people on this board with dozens of years of experience each, and you'll get lots of feedback and advice--with no copay or paperwork!

Hope you feel better very soon.

I'm drinking on average around 120 oz of water and 66 oz of pedealyte. Some days a little more, but never less. After four trips to the ER for total dehydration I had no choice but to step up the fluids.

To keep my strength up I am eating everything in sight, Gluten free of course.

I take rice cakes and crumble them up in a big bowl and add melted butter, salt, and a little honey and I pretend it is popcorn.

I eat a lot of eggs and cheese, gluten free lunch meat and cheese rolled up. Steak, Chicken and Pork Chops off the grill, Salads with just plain olive oil and vinegar, and my favorite home made smoothie with ice, peanut butter, jelly, honey, juice and a little milk.

I was drinking a lot of milk because of the constant burning in my stomach. About 4oz seemed to sooth the burning, but I am now taking Aciflux instead.

I tried the non dairy diet for two weeks and there was absolutely no change.

There are two things that I believe are of importance that occurred which might have brought on the Celiac, both of which had a lot of bacteria.

At the beginning of summer I had two nasty infections on both heels of my feet. They were really badly infected. I went on two different sets of antibiotics for twenty days. I couldn't put shoes on for ten days.

On August 5th I ate what appeared to be a bad piece of crab. That night I was deathly ill with vomiting and diarrhea. It was like that for three days. After three days the vomitting swithched to dry heaves and constant nausea, but the diarrhea stayed and hasn't gone away yet except when I took Immodium and Lomotil. They both stopped the diarrhea, but they left me totally constipated for several days and the cramps and abdominal pain was not worth it. All I could do was lay in bed in pain. My stomach was stretched so bad from the bloating it looked like the skin was going to break. Even the nurses in the hospital told me to stop taking the "D" medicine.

No Lyme or vaccines that I know of,,,,, just a tetanus shot with the heels in June.

I had a GI doctor who ran every possible test there was, except of course for Ciliac, and on my last visit to him he looked me in the eyes and said "Mr Hoffman there is nothing physically wrong with you, it is all in your head, I am referring you to a Psychiatrist to help you deal with your problem".

My family Doctor was so frustrated that he sent me a nice letter dropping me as a patient.

Yet my new DR knew the minute I walked in and gave him my entire history. He took the time to listen and immediately said "Mr Hoffman I believe you have Celiac Disease. The first set of blood work was negative, and the biopsy was negative, but the second set of bloodwork came back definitve Positive for Celiac.

Thanks for all of you input. It is sincerely appreciated.

Joe

[Joe Hoffman]

"Sure hope you can make it Joe. I didnt eat for 2 days when I had to go to an event last year.

The diarrhea for me was not as bad as the dry heaves. My system rejected everything at times and I threw up 2 or 3 times a day for 6 months.

Good luck!"

Ken,

Hey, It was last weekend and I would have had to have not eaten for 5 days. Travel Thurs, at the induction Fri, Sat and Sun and travel again on Mon.

For the first time in my life I am putting my health in front of everything else in my life.

I was really upset when I got that message after the induction party, but they just really have no idea what I am dealing with on a daily basis. Once I take the time to explain it to them I'm sure they will understand I wasn't blowing them off.

Joe

[Fiddle-Faddle]

Joe, Quaker rice cakes seem to make just about everybody with celiac sick. Is that the brand you were using? Instead of that, I would eat Frito's--most people here seem to be able to tolerate them, unless they have a corn intolerance.

Unless you have problems with rice, I would eat plain rice at every meal, even breakfast.. And I would add soft cooked vegies and applesauce to lunch and dinner instead of the salad and smoothie. I still think it might be better for your tummy to avoid dairy and peanuts--2 of the biggest allergens and potential stomach irritants until things get better. Oh, and bananas are binding, and help replace the potassium that you have lost from all the diarrhea. Blue cheeses have mold that was grown from wheat starters, and should be avoided. Some shredded or seasoned cheeses might have wheat, too.

THe thing is, if you have leaky gut, then your villi are likely damaged--and they are what produce lactase, which is what digests dairy products. That's why so many of us here had to at least temporarily cut dairy until our intestines healed.

I've read that drinking TOO much water can cause diarrhea problems. Hmm, you are between a rock and a hard place, though, aren't you? What about watered-down Gatorade (1/2 and 1/2), and try to keep it between 8-10 cups a day? Sip all day, don't guzzle it down, or you'll overload your kidneys. And maybe plain chicken or beef broth? (But READ the label--many brands contain wheat flour!!!)

I have read that heartburn plus temporary relief from drinking milk = a helicobacter pylori infection, which makes sense, given all the antibiotics you were on. They would have destroyed the GOOD bacteria in your stomach. That's where probiotics can help. Plain yogurt is good--but I'm not sure that dairy is the way to go for you right now, so you might want to investigate probiotics in pill form. You might also ask the doctor who actually was celiac-aware--if you ask him about h. pylori, he can test you for that (I think it's a breath test, of all things); unfortunately, the treatment for h. pylori is antibiotics, not antacids, but at least you would know what you are dealing with! The pharmaceutical industry, of course, would prefer you to buy Aciflux for the rest of your life rather than just a few weeks of antibiotics.

Another thing to consider might be systemic yeast infection, again, caused by the antibiotics. I think the "OMG, I might be on to something" thread on this board has several frequent posters who have had to deal with those.

And the tetanus shot IS a vaccine--and does contain thimerosal; at least, the one I got did. It's also possible that they gave you a DTaP-- a tetanus vaccine combined with vaccines for diptheria and pertussis, which is what they give children, and the adverse reaction rate is pretty high, even with the killed pertussis instead of the live one that they used to use. They might have even been using up old vaccines, and they might have given you one of the old "live" versions.

Just curious what you ate WITH the crab on Aug 5? I ask because for years, I was sure that my reflux was caused by the tomato sauce I ate with my pasta. Now I know for sure that it was caused by the PASTA--because I can eat rice-pasta with tomato sauce and not get reflux! So you might be assumign that it was bad crab, when maybe something else you ate was like the last straw for your intestines? Or it may well have been food poisoning, as you suspect.

At least you have one decent doctor who seems to have his head on straight. You might write a nice letter to the one who said it was in your head, explaining that you have been definitively diagnosed with celiac via bloodwork, and that you are considering suing him for malpractice unless he apologizes.

[Joe Hoffman]

Joe, Quaker rice cakes seem to make just about everybody with celiac sick. Is that the brand you were using? Instead of that, I would eat Frito's--most people here seem to be able to tolerate them, unless they have a corn intolerance.

Unless you have problems with rice, I would eat plain rice at every meal, even breakfast.. And I would add soft cooked vegies and applesauce to lunch and dinner instead of the salad and smoothie. I still think it might be better for your tummy to avoid dairy and peanuts--2 of the biggest allergens and potential stomach irritants until things get better. Oh, and bananas are binding, and help replace the potassium that you have lost from all the diarrhea. Blue cheeses have mold that was grown from wheat starters, and should be avoided. Some shredded or seasoned cheeses might have wheat, too.

THe thing is, if you have leaky gut, then your villi are likely damaged--and they are what produce lactase, which is what digests dairy products. That's why so many of us here had to at least temporarily cut dairy until our intestines healed.

I've read that drinking TOO much water can cause diarrhea problems. Hmm, you are between a rock and a hard place, though, aren't you? What about watered-down Gatorade (1/2 and 1/2), and try to keep it between 8-10 cups a day? Sip all day, don't guzzle it down, or you'll overload your kidneys. And maybe plain chicken or beef broth? (But READ the label--many brands contain wheat flour!!!)

I have read that heartburn plus temporary relief from drinking milk = a helicobacter pylori infection, which makes sense, given all the antibiotics you were on. They would have destroyed the GOOD bacteria in your stomach. That's where probiotics can help. Plain yogurt is good--but I'm not sure that dairy is the way to go for you right now, so you might want to investigate probiotics in pill form. You might also ask the doctor who actually was celiac-aware--if you ask him about h. pylori, he can test you for that (I think it's a breath test, of all things); unfortunately, the treatment for h. pylori is antibiotics, not antacids, but at least you would know what you are dealing with! The pharmaceutical industry, of course, would prefer you to buy Aciflux for the rest of your life rather than just a few weeks of antibiotics.

Another thing to consider might be systemic yeast infection, again, caused by the antibiotics. I think the "OMG, I might be on to something" thread on this board has several frequent posters who have had to deal with those.

And the tetanus shot IS a vaccine--and does contain thimerosal; at least, the one I got did. It's also possible that they gave you a DTaP-- a tetanus vaccine combined with vaccines for diptheria and pertussis, which is what they give children, and the adverse reaction rate is pretty high, even with the killed pertussis instead of the live one that they used to use. They might have even been using up old vaccines, and they might have given you one of the old "live" versions.

Just curious what you ate WITH the crab on Aug 5? I ask because for years, I was sure that my reflux was caused by the tomato sauce I ate with my pasta. Now I know for sure that it was caused by the PASTA--because I can eat rice-pasta with tomato sauce and not get reflux! So you might be assumign that it was bad crab, when maybe something else you ate was like the last straw for your intestines? Or it may well have been food poisoning, as you suspect.

At least you have one decent doctor who seems to have his head on straight. You might write a nice letter to the one who said it was in your head, explaining that you have been definitively diagnosed with celiac via bloodwork, and that you are considering suing him for malpractice unless he apologizes.

Thank you so very much for your input. It has given me a lot to think about.

The rice cakes are Publix Brand, 100% Gluten Free.

Joe

[jerseyangel]

I found the greatest help in finally ending my D once and for all is Caltrate 600 with vitamin D--2-3 times a day with meals.

[kenlove]

Sure is too bad but i hope they understand once you explain. Sometimes even when I do explain to friends -- its "Ah come on -- one beer wont hurt you" Usually i reply no it wont, it will kill me.

I started breaking out last night from dh which was not good as I had to do a segment on the ABC Honolulu morning show -- on avocados and some of teh research on tropical fruit I do. -- We face a constant battle it seems. I wish you lcuk

Ken

"Sure hope you can make it Joe. I didnt eat for 2 days when I had to go to an event last year.

The diarrhea for me was not as bad as the dry heaves. My system rejected everything at times and I threw up 2 or 3 times a day for 6 months.

Good luck!"

Ken,

Hey, It was last weekend and I would have had to have not eaten for 5 days. Travel Thurs, at the induction Fri, Sat and Sun and travel again on Mon.

For the first time in my life I am putting my health in front of everything else in my life.

I was really upset when I got that message after the induction party, but they just really have no idea what I am dealing with on a daily basis. Once I take the time to explain it to them I'm sure they will understand I wasn't blowing them off.

Joe