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jcjmdj

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jcjmdj Newbie

On Jan 10th. I went out of town to a larger hospital and had a EGD done. The doctor said that my stomach ws a different color. They done a biopsy. he biopsy showed I had celiac disease.On feb 7th. I had blood work done for celiac. The test confirmed it. I was diagnised with celiac disease. I am stressed out. My doctor told me I had it and handed me a pamplet. Told me to come back in 3 months. that I need to see a dietician. Also, I could go on line to do research.I live in a small town. Everyone looks at me. Like I'm nuts.

In the mean time.I am having severe pain in my stomach. Did anyone else have this problem? What can I do for it. I have been on a celiac diet since I was diagnoised with it.I am tired of the pain. Please can anyone help?


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Ursa Major Collaborator

You need to eliminate all dairy at first (at least six months) as well in order to heal, and the same goes for soy. Also, your stomach and intestines appear to be in such bad shape, that you need to be very careful in what you eat for now.

Gluten free replacement foods like bread, cakes, cookies, cereal and crackers are very hard to digest and may not be a good idea yet until you heal. The same goes for raw foods.

When I started the gluten-free diet, I was unable to eat anything raw for six months, or I would get horrible stomach cramps and diarrhea. I had to cook everything, even fruit. No salad, either. I had a very inflamed stomach, not just inflamed intestines.

You might want to try just eating well-cooked chicken, fish, vegetables and fruit like boiled apples and pears for a little while.

Don't eat hard to digest things like bacon and eggs, either. They'll be fine once you heal, but not now. Nothing greasy.

I found that a homeopathic remedy called sepia really helped with the stomach inflammation. You can get it in health food stores, some pharmacies and even in some grocery stores.

Ignore those dumb people who look at you that way. Maybe you are imagining some of it, too, because you feel so bad. It is their problem, not yours.

Your doctor is unfortunately like many doctors, who diagnose (and you are lucky your doctor knew that much) but haven't got a clue about nutrition and are most unhelpful with helping you cope after diagnosis.

Many dietitians don't have a clue about the gluten-free diet and are useless. You'll do better asking questions here.

Have you been toasting gluten-free bread in a regular toaster? You may have been glutening yourself as well.

You will need a new toaster, you can't clean the old one well enough to be safe. Even a crumb of gluten food can make you sick. The same goes for plastic colanders that have been used for draining wheat pasta, you can't get all the sticky gluten residue out of the cracks.

I know it is tough. But I hope that you will feel better soon.

kenlove Rising Star

What Ursa Major told you is important to follow. You have a lot to learn and research. I went through the same 2 years ago, also in a rural area of Hawaii where most people including myself had never heard of celiac. Some people still think having a gluten free diet is a matter of choice like being a vegetarian. They are very mistaken which I now point out to them. Even yesterday, I had to speak to a hundred people at a avocado festival and I mentioned celiac in my talk. I guess now that I wear that badge proudly and not ashamed of having this disease.

There are so many small things you have to learn, especially issues of cross contamination in your house. It's not just learning what you can and cant eat now and in the next few months but also what you can and cant do, like licking envelopes where the glue contains gluten. Using the same kitchen utensils that were used when preparing foods that contain gluten. Going into kitchen where someone was baking and there is flour in the air. All these and many more can cause you the pain.

Use the search function on the forum and read a lot of the messages for topics that your interested in. All the information is here and on different university web sites like University of Chicago and Columbia.

Good luck!

Ken

On Jan 10th. I went out of town to a larger hospital and had a EGD done. The doctor said that my stomach ws a different color. They done a biopsy. he biopsy showed I had celiac disease.On feb 7th. I had blood work done for celiac. The test confirmed it. I was diagnised with celiac disease. I am stressed out. My doctor told me I had it and handed me a pamplet. Told me to come back in 3 months. that I need to see a dietician. Also, I could go on line to do research.I live in a small town. Everyone looks at me. Like I'm nuts.

In the mean time.I am having severe pain in my stomach. Did anyone else have this problem? What can I do for it. I have been on a celiac diet since I was diagnoised with it.I am tired of the pain. Please can anyone help?

GlutenGalAZ Enthusiast

For the stomach pain you might wanna try a heating pad or take a bath in epson salt.

I also live in a small town where there are a couple of grocery stores and one really good (smaller) health food store. Last year I attempted to ask all of the grocery stores here in town if they carried Enjoy Life (wanted to try) and no one had any idea what I was asking (even though I had a picture) or what gluten free was. I ended up finding it on my own in one of the stores. I have found that asking in the health food store was a lot nicer than the grocery store. They know what I am asking about and I can order stuff through them if they do not stock it.

Here are a couple of websites if you want:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

You can also go to product / company sites and look to see if they have a gluten free list.

example: Hormel Open Original Shared Link

Best of Luck :)

MELINE Enthusiast

HI there. I had severe stomach pain for years untill they finally found out what was wrong with me. Don't worry it will finally go away. For the pain in the stomach it took me 3 months...Something that my doctor told me to do,and was helpfull, is to eat many meals per day but small quantities, many fruits and vegetables and drink at least 10 glasses of water each day. homeopathic ....I found it really helpfull. I mean REALLY helpfull. Please do no feel so bad. I cannot eat lactose, sugar, chicken, corn. many fruits and gluten of course. Just imagine how many things are out of discussion for me. But also think how nice you are going to feel when all the symptoms go away. It took me a good 1 month to feel better. (sorry for any mistakes in my english. It is not my native language). :unsure:

people are often rude when they are safe. When they do not have a problem they cannot understand yours. But they do not have to understand. Do not make a big deal out of it. You just have a special diet. That's all. Be patient and everything will be better. EVERYONE feels better after some time, but it is a different healing time for each one.

Rivergirl Apprentice

I too had such severe damage by the time I was diagnosed and was in a great deal of pain. Not to be discouraging, but it took me nearly 9 months to start feeling better when eating a salad or raw veggies. The best thing I did for myself was buy a Giant Soup Recipe Book from the sale rack of a local book store. Every Sunday I make a large pot of soup (replace flour with a safe substitute) and then date and freeze the extra. Soup is an easy to digest option - just be careful with how much cream or milk you use. I also have found Cocunut Milk (used in Thai soups) is much easier for me to digest than cow's milk (but everyone is different).

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    • Aretaeus Cappadocia
      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
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      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
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