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AFH

It's Not Celiac For Me

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I got the results of my Colonoscopy and EGD. I don't have celiac disease but I do have Barrett's esophagus. I'm so scared. One of the symptoms I hoped going gluten-free would help would be my anxiety but now I don't feel like I have any hope of the anxiety letting up and then add a diagnosis like Barrett's and I can't get control of myself.

I've tried to find some kind of forum for Barrett's but had no luck. I just needed to talk to someone. I'm only 24 it seems like I'll be living with this for so long that my cancer risk is even greater.

My Doctor said that diet is not as important as taking the PPI's but I'm so afraid that everything I'm putting in my mouth is going to kill me. I don't have anything in my house to cook that isn't spicy or has tomato or onions or isn't very fatty. We're strapped for cash right now so I can't really restock the kitchen. I have no idea what to make for dinner now or in the future. At least I'm starting a new job Monday. I hope that gets things off my mind.

I'm sorry I know this has nothing to do with Celiac but I just need to vent. I'm scared and I feel all alone. Doc said not to lose sleep over it but it's hard not to when she herself said my esohphagus is "lit up like a Christmas tree."

Sorry to whine so much.

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You doctor claims you can't have celiac disease? What evidence does he have? A colonoscopy and checking out your esophagus without looking at your small intestine and taking biopsies there will NOT rule out celiac disease.

There is a reason why your esophagus is in such rough shape. In the article I read just now, the stated reason is gastric reflux having eroded the esophagus. Gastric reflux is a common symptom of celiac disease.

http://en.wikipedia.org/wiki/Barrett's_esophagus

So, what I am saying is, that you may well have celiac disease after all. I would try the gluten-free diet (as well as eliminating all dairy and soy) before I would take heavy duty pills, if I was in your shoes.

I had an ulcer in the esophagus before, caused by gastric reflux. And even though I have a hiatal hernia, I usually don't have heartburn and/or gastric reflux now, unless I eat something I am intolerant to.

I am afraid you have a very ignorant doctor. Diet is the most important thing right now. Of course, the pharmaceutical companies wouldn't be happy if you could get better by just changing your diet. That is why they make sure doctors are only taught to control symptoms with expensive pills, rather than treat the cause (which IS diet).

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I am afraid you have a very ignorant doctor. Diet is the most important thing right now. Of course, the pharmaceutical companies wouldn't be happy if you could get better by just changing your diet. That is why they make sure doctors are only taught to control symptoms with expensive pills, rather than treat the cause (which IS diet).

I would agree with Ursa Major. You should try dietary changes before taking any drugs. Medications can alleviate symptoms for a time, but they aren't getting to the root of the problem. Try cutting out the gluten, dairy, and soy first and see if that doesn't help. Also, a LOT of people on these boards see drastic improvements in anxiety issues as well as physical issues after changing their diet.

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We're strapped for cash right now so I can't really restock the kitchen. I have no idea what to make for dinner now or in the future. At least I'm starting a new job Monday. I hope that gets things off my mind.

Sorry to whine so much.

I've only been gluten-free for 2 months, but I hope this might help you with your worries over money.

Before I had to start eating gluten-free, my family of 4 (me, dh (husband), ds (son), and dd (daughter)) ate out a lot, and ate a lot of convenience foods like boxed hamburger helper, au graten potatos, frozen pizzas, crescent rolls, canned food, potato chips, pretzels, etc. When I found out that I had to stop eating gluten, almost all of those things had to stop. It was a shock to the system and our wallet. We tried to replace all of that stuff with gluten-free versions, but it didn't go over well because the gluten-free versions tasted like CRAP (the kind we bought, anyway) and was so expensive. What we have found, over the last few months, is that we are buying fresh foods and cooking from scratch. I was a terrible cook before, but I'm learning. We've had to go through some rough meals, but we are troopers.

Buy fresh fruits and veggies (prepackaged salad is expensive and comes in small quantities). Hamburger and chicken and fish. Potatoes. Rice. Those aren't too expensive. Remember, you aren't replacing the old food, you are changing the way you eat.

At first it was SO SO SO hard! My body went through withdrawals and I cried every time we went grocery shopping. Cooking is a chore. I have to plan meals because I can't get up and grab something to take to work for lunch. Make lots of leftovers. I'm still having a hard time. Yesterday I had a crappy lunch because there was nothing in the house - I brought a can of manderine oranges and an apple to work. :-)

Good luck. I'll be the diet will help you a lot.

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I agree that diet is the most important thing right now. That is why I'm having trouble finding anything to eat at the moment. My Doc said to cut back on Coffee and cokes but I am cutting them out completely. I'm just to afraid to keep having them.

A celiac biopsy was taken and came back normal. I guess I should have stated that. I was very surprised that my Doctor was actually the first one to bring up celiac as a cause for my symptoms. My husband also had some of the symptoms and was willing to try the diet as well.

My current diet is very much like what Trillian stated. I feel overwhelmed with this. A new job on top of having to cut out convenience foods. Man this is gonna be rough. Part of the reason I used so many boxed foods is cooking things like chicken upped my anxiety to the point of washing my hands until they cracked open. I'm always so paranoid about germs.

I guess maybe I should try gluten-free anyway. I hope to go to the library tonight and pick up some cookbooks. I know they have the Gluten-free Goddess" books. Are those a good starting point?

IF Celiac and Reflux are connected, does that mean other people here may have Barrett's. Does it get better with the gluten- free diet?

I am having a hydrogen breath test at 9am tomorrow. Hoping I will get to take to the doctor some more but I assume I will only get to see the nurse.

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I agree that diet is the most important thing right now. That is why I'm having trouble finding anything to eat at the moment. My Doc said to cut back on Coffee and cokes but I am cutting them out completely. I'm just to afraid to keep having them.

A celiac biopsy was taken and came back normal. I guess I should have stated that. I was very surprised that my Doctor was actually the first one to bring up celiac as a cause for my symptoms. My husband also had some of the symptoms and was willing to try the diet as well.

My current diet is very much like what Trillian stated. I feel overwhelmed with this. A new job on top of having to cut out convenience foods. Man this is gonna be rough. Part of the reason I used so many boxed foods is cooking things like chicken upped my anxiety to the point of washing my hands until they cracked open. I'm always so paranoid about germs.

I guess maybe I should try gluten-free anyway. I hope to go to the library tonight and pick up some cookbooks. I know they have the Gluten-free Goddess" books. Are those a good starting point?

IF Celiac and Reflux are connected, does that mean other people here may have Barrett's. Does it get better with the gluten- free diet?

I am having a hydrogen breath test at 9am tomorrow. Hoping I will get to take to the doctor some more but I assume I will only get to see the nurse.

Both my blood tests and biopsy came back negative, but they were false-negatives! My doctors confirmed celiac based on my positive reaction to the gluten-free diet. I had terrible gastrointestinal side effects from food, and was misdiagnosed for years with gerd, hiatal hernia, etc. I was on medication for these, but they never seemed to work perfectly.

You may find that your esophagus heals with this diet and you won't need meds.

There is convenience food for gluten-free diets, but it's expensive. gluten-free frozen food like pizza and mac and cheese.

I love my gluten-free cookbooks! I couldn't survive without them. Plus, there are a ton of recipes on this website. Like I said before, make lots and lots of left overs so you can use those as convenience food.

You'll get used to fruit and veggies. I never, ever used to eat them. But now, 2 months into the diet, I'm starting to like them (gasp!). And I'm eating red meat, something I rarely did before. But since I had to reduce my consumption of boxed, canned, and take-out meals, I had to widen my fresh-food options.

By the way, there are lots of dry cereals available that are gluten-free. I love that!

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I really have to agree with the others who suggested going gluten-free, regardless of the negative biopsy.

About the chicken germs.... I am with you!!!!!! But it's not worth forgoing fresh meat.

Have you considered using gloves instead of your bare hands? You can get powder-free disposable latex gloves pretty cheap. And I keep Clorox wipes or Lysol wipes under my kitchen sink to clean up after I prepare meat. I wipe any wet places with a paper towel, throw that out, then wipe down with the Clorox wipes. It KILLS those germies dead.

I also keep all my meat in plastic grocery bags. The meat package never directly touches my fridge, freezer, or other food packages.

I'm also a slightly obsessive hand-washer (not quite OCD, but pretty bad still) and I keep a bottle of lotion right by the kitchen sink. I put lotion on each time I wash my hands, or if I'm cooking, I slather it on after I'm done with the prep work. (I'd say I typically wash my hands 20-25 times while I cook dinner, scrubbing with soap each time. When I'm not cooking, it's not quite as bad.)

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And I keep Clorox wipes or Lysol wipes under my kitchen sink to clean up after I prepare meat. I wipe any wet places with a paper towel, throw that out, then wipe down with the Clorox wipes. It KILLS those germies dead.

You know, those wipes are toxic. And while they kill germs, you poison yourself by using them all the time.

Soap and dishwashing detergent kill those germs as well, without harming you (unless you use antibacterial soap, which has been proven to be detrimental to health, and no more effective than regular soap in killing germs).

AFH, unless your doctor took at least six to ten samples for the biopsy, the chances of a false negative are very high. And even if he took ten, the chances of getting a false negative are still high enough.

You have 22 foot of small intestine, with a surface area of a football field. If the damage is patchy, it is very easy to take the biopsies from the undamaged areas, missing the damaged ones.

A negative biopsy cannot rule out celiac disease.

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You know, those wipes are toxic. And while they kill germs, you poison yourself by using them all the time.

Soap and dishwashing detergent kill those germs as well, without harming you (unless you use antibacterial soap, which has been proven to be detrimental to health, and no more effective than regular soap in killing germs).

You're right, they are toxic. I don't use them on eating or cooking surfaces, of course, and I also wash my hands after I use the wipes. :)

The problem I have with using dish detergent is that I feel like it can miss germs, and is more likely to spread them around. But this is just my feeling-- I personally feel safer using the wipes.

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AFH, I agree with everyone else--I don't think celiac has been ruled out at all. I think the biopsy either missed damage that was there or else gluten is causing your immune system to attack other things besides for the lining of the intestine. Whether you want to call it gluten intolerance or pre-celiac, or celiac-that-hasn't-advanced-enough-to-damage-your-entire-intestinal-tract is moot, isn't it?

I'm not saying to go off the PPI's just yet--but please see if a totally gluten-free diet for say, a year, helps enough that you can either lower the PPI dosage or go off completely.

I have a hiatal hernia, and have had 3 decades of reflux. I had always assumed that acidic food was the cause, as when I had spaghetti , I had terrible reflux. I assumed it was the tomato sauce. Guess what? It was the spaghetti that caused it!!!!

I have been gluten-free for nearly 2 years, and in that time, I have been able to cut my thyroid med and my Nexium dose in half. Before going off gluten, my dosages had increased every 6 months or so for 3 YEARS.

You should also be checked for a helicobacter pylori infection--it is a very common cause of chronic reflux (and it's the chronic reflux that seems to cause Barrett's).

So please, give the gluten-free diet a real try, see if first of all you feel any better at all--and that might even include other symptoms such as joint pain, mental focus, energy level, bloating, intestinal discomfort,, asthma, etc. Even some neuro conditions, such as bipolar syndrome, Parkinson's, Alzheimer's, and epilepsy have been found to be associated with--you guessed it, gluten intolerance. (Not that I'm suggesting that you necessarily have any of those!) But if anyone in your family has any of those, or things like MS, fibromyalgia, lupus, rheumatoid arthritis, or inflammatory bowel syndrome (yeah, sometimes they call it a disease, but it's really celiac that nobody bothered to check for)--then your chances of really having celiac are pretty high.

Please let us know how you are feeling (better, we hope!), and if you have any questions or recipe requests, or need support in any way!!! (We're pretty good at that around here!)

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In regards to the Barrett's. My father has Barrett's for 20 years and it is very severe. One thing that really helped him was aloe juice. He uses the George's brand and found it very soothing to the stomach and helped heal the ulcer that was in his esophogus.

He was told no spicy, tomato, greasy or caffine. He's been on PPI's for over 25 years and this has caused a whole lot of digestive problems over the years. He doesn't even have acid reflux anymore and his Dr. keeps telling him to take the PPI's to prevent cancer, so he does but the aloe has been amazing.

It's interesting that this could be celiac related. It would be interesting for him to stop gluten but he is 70 years old now and has no intentions of giving up bread, it was hard enough to give up coffee.

As far as I know there is no cure for Barrett's.

hth

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I have Barrett's Esophagus. This occurred after 7 years of having really bad acid reflux. When I was diagnosed with Celiac last year, my acid reflux almost completely stopped when I went on a gluten free diet. I go for a EGD every couple of years to check for cancer, and I still take my Prevacid and Zantac to keep the reflux from returning. It was amazing how the acid problem went away from the change in my diet. Even though I have Barrett's, I know that the change in my diet will help keep it from getting worse. You just have to keep an eye on it.

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I've heard several times that the body has the ability to heal itself if given the right tools.

I have tried for 10 years to get well. And then I found out I have malabsorption of vitamins which led me to celiac. The reason we get sick is our bodies are missing the right tools to repair or we are inflicting damage somehow, and I believe that Celiac does both of those things. We damage the intestines with gluten and then we can't absorb vitamins and then the list goes on and on.

I have reflux too and I'm scared of doing any further damage. I am going to give up gluten to see if it helps. I'm almost positive it will. If you can, read Going Against the Grain. It talks about grains and how they cause inflammation in the body, and that's what most diseases are, inflammation.

Just give it a chance.

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You have gotten some great advice already. The only thing I have to add is that instead of the PPI's you may want to consider using pepto bismal and the gluten free diet at first. It can be hard to get off of PPI's once you are on them, going off can cause a rebound effect. Do get yourself on the diet, that will most likely give you more relief than anything else.

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Wow Thanks for all the advice. I went back to the Doc yesterday and had a hydrogen breath test which was positive for a bacterial overgrowth. I don't really know what it means, but the nurse is gonna call me next week and talk to me about it.

I am still very serious about going gluten-free but having a hard time figuring out what I need to eat. Plan to go grocery shopping today and see what I can come up with. I'm not entirely sold on the idea of stopping the PPI's because I cannot feel when I have reflux so I would not know if my diet was helping the problem. I've cut out coffee and cokes and am trying to eat less fat in order to loose weight. I've heard weight loss helps with the acid problem.

My Stomach pains are not actually related to the acid reflux. This is so annoying because I have no idea weather I'm overdoing it on the tomato sauce because I don't actually get heartburn. That makes me want to cut out certain foods completely but then I can't figure out what to eat.

Now my Doc only did 3 Biopsy's so I would agree that Celiac is not ruled out. I do have an aunt with Barrett's and I spoke with her yesterday. She said hers has improved significantly with the drugs and small diet changes (she is also diabetic.) She said that she had cut down on the pasta and bread because of the diabetes. I wonder if that also helped her Reflux and she just doesn't realize the connection. Fiddle-Faddle said something about Rheumatoid Arthritis. I didn't know that had a connection. My other aunt on the same side of the family has that. I also have a cousin on the same side with IBS.

If nothing else I want to try gluten-free for my husband. He seems to have some of the symptoms (including heartburn.) He said getting rid of his "brain fog" was worth giving up the yeast rolls.

I know I'm forgetting to say something. I'll come back when I think of it. Ideas for quick meals would be a life saver for me right now. Links are much appreciated. I have to start packing a lunch too so thats a little more planning ahead than I'm used to . I am so thankful I have a husband that will help. Even if I am kinda mad at him that he just left his Dr. Pepper sitting right beside me.

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Yes, I had to stop eating Schar bread because I was getting sick on it all the time. I believe if I am not mistaken (it has been a long time) the Artisan line does not. I received this tip from someone else, and I don’t know if it is accurate but it seemed to help me, at least. 
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