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Desperate For Help


looking4help

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looking4help Apprentice

Hi there everyone! I am new to the board so please forgive any mistakes I may make.

I am desperate for help! I will try to sum up quickly what the issues are that I am having.

In 2008 I was admitted through the ER with severe pain in my left side abdomen. It was the worse pain I have ever had and I have 4 kids. I was doubled over in pain and could barely walk. The ER diagnosed me with diverticulitis and admitted me to the hospital.

Everything goes down hill from there. Since then I have had all of the following:

severe abdominal pain sometimes in a specific area but has been all over

nausea

migraines

join pain

fatigue

D and C but mostly D all the time now

dizziness

mucus in my stool

tarry black stool

neon green stool

passing stool with food not absorbed

stool that floats

heartburn

vision problems... blurry, cloudy

exhaustion... the kind that I have to sit and I literally fall out asleep for HOURS

There is more but off the top of my head I can't think of them. I have had 4 cat scans of my abdomen since Aug 09 as well as a colonoscopy and endoscopy which didn't provide much help. They did say that I severe acid reflux and my villi seemed stunted.

I was very angry because it didn't seem the GI dr. was too concerned. I am in CONSTANT pain. I was basically bedridden for almost 6 months and only in the last couple of months have I really made myself get up because things like my daughter's graduation was happening and I was not going to miss it.

I fired the first GI and now have a new one. He has ordered blood work (took 10 viles!) and am waiting on that. In the meantime he wants me to go see my OBGYN to rule out endometriosis. (sp) That appt is this Wed.

In the meantime I have read and researched so much that I put myself on a gluten free diet and I can tell the difference in many of the symptoms but not the pain.

Today I am having a horrible time with bright green poo that is sludge like. I had lots of D last night. :(

I just want to see if anyone has any suggestions? Does it sound like I am even looking in the right area with joining your board?

Thanks so much for any help/suggestions etc! I feel so very alone.

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butterfl8 Rookie

Reading your post reminded me of my own journey. Hopefully you can end up like I did, with an answer, and feeling about a million times better. Have you asked your Dr. for pain meds? Take what you need to in order to get through the day. That is what is important now. I would just say to follow all the appts., they are annoying and tedious, but everything else has to be ruled out before they can confirm anything.

Please be careful about going gluten free right now. I would hate for you to have a dr. who is going to tell you that something came back as inconclusive, and so you can't be diagnosed as either celiac or gluten intolerant, when that may be what is wrong. Then some Dr. down the line may have you do a 'gluten challenge' and have you eat copious amounts of bread which will cause immense pain :angry: (if that is the problem).

We are always willing to help! Check out the pre-diagnosis board for other test information too. And let us know how things progress.

-Daisy

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GlutenFreeManna Rising Star

Hi! Many of those symptoms are similar to what I had pre-gluten free, so you shouldn't rule out that it's gluten. Also, however you may have other things going on that are correlated to celiac's disease. Gallbladder issues and endometriosis (sp?) are two things off the top of my head that many women with celiac's disease experience. I had gallbladder problems long before I knew about my gluten problems. How long have you been trying the gluten free diet and what have you been eating?

If you see some difference on a gluten free diet, then that's a good sign. You didn't exactly say, have any of your doctors tested you for celiac? They must have done some test to be able to tell that your villi are "stunted". That is a sign of celiac's disease. If you do the diet and it works you will have to go back to eating gluten to get a chance at a positive test result, so don't completely cut it out if you want to get that test anytime in the future. Some people, though are so fed up with doctors they self-diagnose with a gluten free diet and never get the blood tests. I was bedridden with my symptoms for some time like you and by the time I got around to suspecting gluten I had been tested for so many things, racked up so many medical bills and dealt with so many uncaring doctors I didn't care about getting the tests. You need to do whatever is best for you, no matter which path you take.

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looking4help Apprentice

Thank you both for your responses. To answer your question yes, I have been tested. That was the first GI dr that I didn't get much help from. The information about my stunted villi came from the endoscopy she did. They took samples and said it was inconclusive but it "could" be. I was so frustrated with that Dr. and the lack of answers I fired her.

I have lost going on 15 lbs now due to a combination of malabsorption, lack of food (because I am so afraid to eat because of pain) and what I do eat goes right through me.

Today is bad. My gut hurts so bad. It's a burning, rolling, cramping pain. I have been pooing all day this neon green sludge.

I have had my liver, pancreas, kidneys, and gall bladder tested. The dr. said they were all fine. But neon green poop? Geezz!

I do have pain relievers. The new GI dr. called in a script of vicoden for me. I hate taking them but do take 1/2 of one when the pain is too bad.

As for being diagnosed with gluten issues, I don't want to go back to eating it just to be diagnosed. I just need help with my bathroom issues, energy levels and such. Being gluten free has eliminated the migraines, dizziness and other neuro symptoms.

I know it's gross but can anyone help me on the poo issue? This is NOT the first time for this and it seems to be happening more and more. :(

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Ahorsesoul Enthusiast

For the poo issues, try going gluten free.

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looking4help Apprentice

I have been gluten free since April of this year. (2010)

So very frustrated because of the pain, the embarrassment and not to mention how much of my kids lives I am missing because I am stuck on the sidelines, in the restroom or just can't get out of bed. :(

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Skylark Collaborator

Oh, geez. I feel so bad for you. I really, really hope your new GI doctor is good. It sounds like you have gluten issues, but I guess it's more than just gluten if you're completely gluten-free and still cramping and running for the bathroom.

My mom gets pain, cramping, gas, and diarrhea from eating fructose. Vomiting too. She has what's called fructose malabsorption. She didn't have the extreme pain you're describing, but she feels a million times better if she eats a low fructose, gluten free diet. She eats a lot of potatoes, white rice, lean meats, and greens like collards and spinach, which are all gluten-free and low in fructose. She can't eat fruit at all (not even tomatoes), some veggies are a problem, onions have enough fructans to make her sick, and she steers clear of anything processed that has fructose or HFCS on the label.

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GlutenFreeManna Rising Star

I have been gluten free since April of this year. (2010)

So very frustrated because of the pain, the embarrassment and not to mention how much of my kids lives I am missing because I am stuck on the sidelines, in the restroom or just can't get out of bed. :(

Okay, tell us what your typical diet is like. What are you eating? Also what personal hygiene products do you use? You need to look at make-up, lotions, shampoo, hairspray, toothpaste, everything. Maybe we can help you pinpoint where gluten is getting into you or if you are reacting to other foods. Have you also tried cutting out dairy or soy? Those are two foods that people often have trouble with as well.

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The Fluffy Assassin Enthusiast

...

Today is bad. My gut hurts so bad. It's a burning, rolling, cramping pain. I have been pooing all day this neon green sludge.

I have had my liver, pancreas, kidneys, and gall bladder tested. The dr. said they were all fine. But neon green poop? Geezz!

...

Some suggestions from the Mayo Clinic: Open Original Shared Link

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ravenwoodglass Mentor

Thank you both for your responses. To answer your question yes, I have been tested. That was the first GI dr that I didn't get much help from. The information about my stunted villi came from the endoscopy she did. They took samples and said it was inconclusive but it "could" be. I was so frustrated with that Dr. and the lack of answers I fired her.

I have lost going on 15 lbs now due to a combination of malabsorption, lack of food (because I am so afraid to eat because of pain) and what I do eat goes right through me.

Today is bad. My gut hurts so bad. It's a burning, rolling, cramping pain. I have been pooing all day this neon green sludge.

I have had my liver, pancreas, kidneys, and gall bladder tested. The dr. said they were all fine. But neon green poop? Geezz!

I do have pain relievers. The new GI dr. called in a script of vicoden for me. I hate taking them but do take 1/2 of one when the pain is too bad.

As for being diagnosed with gluten issues, I don't want to go back to eating it just to be diagnosed. I just need help with my bathroom issues, energy levels and such. Being gluten free has eliminated the migraines, dizziness and other neuro symptoms.

I know it's gross but can anyone help me on the poo issue? This is NOT the first time for this and it seems to be happening more and more. :(

The blunted villi are diagnostic of celiac. Your GI in my opinion is clueless.

I am glad to hear you are gluten free as you need to be. I would not keep eating gluten as you really are diagnosed even though your doctor didn't come right out and say so.

Please do tell us what your diet is typically like. You should be eating as much whole food as possible and do delete soy and dairy for right now. Go with fresh meats and chicken and seafood, fresh or single ingredient frozen veggies and fruits. For now make sure you cook them throughly as they will be easier to digest that way. If you like sweet potatoes eat them baked or mashed, they have both soluable and insoluable fiber. Stay away from processed gluten free specialty foods for now. Many contain ingredients we are not used to eating and many also contain soy which may or may not be an issue for you.

Make sure you do the things you need to do to make your home safe. Get new colanders, a new dedicated toaster, replace cutting boards and wooden utensils. It would be a good idea for now to check your toiletries and eliminate gluten from them and any makeup you use.

If your significant other is a gluten eater make sure they brush their teeth throughly before you kiss and don't bake with gluten flours for others.

I hope you are feeling better soon. Going gluten free will not interfere with testing for other issues. You have had your biopsy and it was positive so even if you had negative blood work do go ahead and start on the gluten-free lifestyle.

Also for the pain, I have had great luck with good old pepto bismal liquid for the searing pain from being glutened. If there is no reason for you not to try it do give it a try. Be sure also that you check any meds and supplements for gluten. Ask us here and/or go to the maker to get that info. Supplements with wheat and barley grass are NOT safe no matter what the bottle says so do read all ingredients.

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butterfl8 Rookie

Okay. Now that we have more info--One thing that popped into my head too is that script for vicodin. Is it gluten free? talk to your pharmacist. Here's a great resource-- Open Original Shared Link

For me the pain did take a while to go away after going gluten free. I think that was just because my intestines we super damaged, and anytime I did something that irritated them (Like eat :rolleyes: ) it hurt. Just go as clean as you can imagine, and then even more clean. You will feel better, if celiac disease is the only thing going on. But it will help.

-Daisy

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frieze Community Regular
Open Original Shared Link
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looking4help Apprentice

I am just now returning home after a BBQ at a friend's house in honor of all the dads. Boy did I almost mess up! My friend is sooo very sweet! She was helping me look at all the labels and she even used foil on the grill for me and everything~!

So, everything is all going good and I was just about to put a big heaping spoonful of beans on my plate and she says don't worry about gas I put beer in them. She must have seen the horror on my face because she then said in unison with me the word barley. Whew! Almost poisoned myself!

Anyways, I stayed away from everything questionable and still enjoyed myself with the BBQ chicken.

Thank you all for the wonderful responses so far!~ For the first time in so very long I feel that someone "gets" it.

To respond to so many: my typical diet

breakfast is usually a bowl of chex cereal (gluten free of course)

Lunch is usually:

gluten free crackers

pepperoni slices

sharp cheese

Dinner is usually grilled fish, chicken or a repeat of either breakfast or lunch

I did allow myself to have fresh salad this week with romaine, carrots, tomatoes and gluten free dressing. NO CROUTONS

That's it. Really, I am so very scared to eat anything. Everything hurts so bad.

I don't wear makeup and I haven't checked lotion or shampoos but will do that asap.

Hubby is very supportive and has even stated he is not cooking 2 meals so everyone else is eating gluten free as well when he cooks. I did throw out all wooden spoons, etc. So utensils cookware etc are good to go.

I will check with the pharmacy on the vicoden as well.

I have an obgyn appt Wed to check for endometriosis. Then I go back to the NEW GI dr.

Do you guys have any suggestions on what I can ask or look for when I visit either the obgyn or the GI dr?

Thank you all so much!

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looking4help Apprentice

Okay, tell us what your typical diet is like. What are you eating? Also what personal hygiene products do you use? You need to look at make-up, lotions, shampoo, hairspray, toothpaste, everything. Maybe we can help you pinpoint where gluten is getting into you or if you are reacting to other foods. Have you also tried cutting out dairy or soy? Those are two foods that people often have trouble with as well.

OMG! I just realized how gluten is getting into my system! I figured it out when reading another thread here. I used Aveeno lotion like it is going out of style! WHY OH WHY did I never figure that out?

I am RUNNING to the bedroom to throw it all away!

Please keep helping me get to my goal of gluten free and HEALTHY!

Thank you all!

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GlutenFreeManna Rising Star

I am just now returning home after a BBQ at a friend's house in honor of all the dads. Boy did I almost mess up! My friend is sooo very sweet! She was helping me look at all the labels and she even used foil on the grill for me and everything~!

So, everything is all going good and I was just about to put a big heaping spoonful of beans on my plate and she says don't worry about gas I put beer in them. She must have seen the horror on my face because she then said in unison with me the word barley. Whew! Almost poisoned myself!

Anyways, I stayed away from everything questionable and still enjoyed myself with the BBQ chicken.

Thank you all for the wonderful responses so far!~ For the first time in so very long I feel that someone "gets" it.

To respond to so many: my typical diet

breakfast is usually a bowl of chex cereal (gluten free of course)

Lunch is usually:

gluten free crackers

pepperoni slices

sharp cheese

Dinner is usually grilled fish, chicken or a repeat of either breakfast or lunch

I did allow myself to have fresh salad this week with romaine, carrots, tomatoes and gluten free dressing. NO CROUTONS

That's it. Really, I am so very scared to eat anything. Everything hurts so bad.

I don't wear makeup and I haven't checked lotion or shampoos but will do that asap.

Hubby is very supportive and has even stated he is not cooking 2 meals so everyone else is eating gluten free as well when he cooks. I did throw out all wooden spoons, etc. So utensils cookware etc are good to go.

I will check with the pharmacy on the vicoden as well.

I have an obgyn appt Wed to check for endometriosis. Then I go back to the NEW GI dr.

Do you guys have any suggestions on what I can ask or look for when I visit either the obgyn or the GI dr?

Thank you all so much!

Okay, this helps a lot. I know you're not going to like this but you need to cut out the dairy (milk and cheese) for a while. Part of the reason you are still having so much pain is because you have blunted villi. The villi in your intestines are what produce lactase, which breaks down lactose in dairy products. Since your villi are damaged they cannot produce lactase and break down all the dairy you are consuming--So you are very likely lactose intolerant. Many other celiacs have trouble with casein. The good news is that once your body heals you may be able to add cheese and milk back in slowly. I have been gluten free for 6 months and I can now tolerate yogurt and some low-lactose cheese every once in a while.

Another thing you should seriously consider is cutting back on or stopping the processed gluten free foods (chex cereal, gluten-free crackers, etc) The reason is that these foods are more difficult for your body to digest. Go with fish, chicken, meat, cooked vegetables, and fruit in moderation. Potatoes and rice are good comfort foods if you need the carbs.

Finally, if you haven't already try to find yourself a gluten free/soy free/dairy free multi-vitamin to make sure you are getting all the nutrients your body needs to heal.

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GlutenFreeManna Rising Star

OMG! I just realized how gluten is getting into my system! I figured it out when reading another thread here. I used Aveeno lotion like it is going out of style! WHY OH WHY did I never figure that out?

I am RUNNING to the bedroom to throw it all away!

Please keep helping me get to my goal of gluten free and HEALTHY!

Thank you all!

I'm glad you have figured this out. There will be many more great "A HA" moments like this as you heal. I just realized this weekend that I could be glutened from sharing a water bottle with my husband.

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julandjo Explorer

To respond to so many: my typical diet

breakfast is usually a bowl of chex cereal (gluten free of course)

Lunch is usually:

gluten free crackers

pepperoni slices

sharp cheese

Dinner is usually grilled fish, chicken or a repeat of either breakfast or lunch

I echo others' thoughts on cutting out the processed gluten-free stuff (crackers). I've found that I have problems with a lot more than just gluten. It took months to figure this out and that whole time I was eating the crackers, cookies, etc. thinking they were all safe. Turns out I have a big problem with rice, which is in almost all that stuff! Now that that's cut out of my diet I'm a whole new person. I highly recommend eating only whole foods until you're feeling good, and at that point you can trial other things. Otherwise it's next to impossible to pinpoint what's hurting you. Also, check your pepperoni. Most that I've seen contain monosodium glutamate (msg), which makes a LOT of people, celiac or otherwise, sick. For me, msg causes migraine, bloating, cramping, horrible gas and diarrhea. Even in very very small amounts.

As far as the Aveeno, you may or may not be reacting to it. How does your skin look/feel? I'm incredibly sensitive to gluten, like I can't even eat food that's been processed on the same equipment as wheat products, without major consequences. But I use Aveeno on my whole body every single day. The only time I get dh is when I've actually consumed gluten. Just throwing that out there! Good luck!

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looking4help Apprentice

Thank you all for your help! I am sitting here reading and realizing that my fears I was having last night are being confirmed. After reading so much on this board I laid in bed last night and thought I really am going to have to cut more out of my diet and not just gluten.

Based on suggestion here I did check the vicoden as well as my cymbalta and both were on the gluten free list. Whew!

As someone who was raised on fast and processed foods this is an adventure for me. I appreciate the help and support of all of you!

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BlueBridie Newbie

Thank you 'looking4help', although I haven't experienced half your issues, your questions and some of the answers have really helped me. I've only been Gluten Free for a week, but am learning quickly thanks to reading other people's journeys. I've been wondering why I've been getting stomach cramps and all sorts of nasties now that I'm OFF the gluten, and now I know why! I've tried replacing them all gluten free food and have probably been eating twice as much processed food than I did a week ago! Hopefully cutting down on all the carbs will help us both!

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looking4help Apprentice

As far as the Aveeno, you may or may not be reacting to it. How does your skin look/feel? I'm incredibly sensitive to gluten, like I can't even eat food that's been processed on the same equipment as wheat products, without major consequences. But I use Aveeno on my whole body every single day. The only time I get dh is when I've actually consumed gluten. Just throwing that out there! Good luck!

Hi there! Thanks for your response. To answer your question my skin looks fine but the feel is another story. I am constantly itchy and dry hence using so much lotion. I hate oily lotion and Aveeno is really the only one that I found absorbs into my skin.

Do you think the itchy, dryness is due to my problems or just because?

THX!

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looking4help Apprentice

Thank you 'looking4help', although I haven't experienced half your issues, your questions and some of the answers have really helped me. I've only been Gluten Free for a week, but am learning quickly thanks to reading other people's journeys. I've been wondering why I've been getting stomach cramps and all sorts of nasties now that I'm OFF the gluten, and now I know why! I've tried replacing them all gluten free food and have probably been eating twice as much processed food than I did a week ago! Hopefully cutting down on all the carbs will help us both!

Bluebridie,

You are very welcome! I so totally relate to your message. I too am finding myself depending heavily on this forum vs. anything else. It doesn't seem that the docs are really taking me very seriously.

I am so very tired of going to appts. only to be looked at like I am out of my mind and should be committed.

I really find more comfort and information here. One thing I have learned is this: DON"T give up. There are others in the world that understand and can help.

Now I say don't give up but honestly I deal with the feeling of giving up myself almost daily if not several times a day.

Hang in there and tell us about yourself and maybe we too can help you!

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kareng Grand Master

Hi there! Thanks for your response. To answer your question my skin looks fine but the feel is another story. I am constantly itchy and dry hence using so much lotion. I hate oily lotion and Aveeno is really the only one that I found absorbs into my skin.

Do you think the itchy, dryness is due to my problems or just because?

THX!

Cerave is a thick cream that my Hubs dermatologist recommended. It is gluten-free and I use it because my skin was so dry and itchy. Also found that as my vitamin levels got better (low for iron, B12, D, Calcium) my skin got better. Cerave is found in drug stores like Walgreens and CVS. Not sure in other parts of the country where to find it.

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T.H. Community Regular

One quick thought - if they haven't done a stool test for parasites yet, I'd ask for one. And get someone to smack 'em in the head for not doing such a thing.

But goodness, I'm so sorry you are having so many problems! I have not had quite the same journey, but I'm definitely in the boat of 'gluten free and feel AWFUL,' but I was lucky and found an amazing doctor in my town (I had to hunt him down, LOL). So, lemme share what happened to me, in case it helps, eh? I have read many of the posts, but not all, so if some of these ideas are repeats, my apologies!

For me, I went gluten free, and I started having pain, nausea, dizziness, diarrhea, brain fuzziness, exhaustion, all that fun stuff. But after a few changes, it has gone away.

My awesome doc (who I probably praise too, too much, but he has just saved my freaking life, so I don't mind) has a lot of celiac experience. He passes on the current info, as well as trends he's been simply seeing among his patients. Both of these have helped me a lot. He said:

- people with celiac disease often have other food allergies. We tested me for some, and I was allergic to half the foods I was eating all the time, including chicken! They gave me no itching, no hives - still don't - but if I eat them, I get tons of gut pain, the runs, constipation, dizziness, etc... My allergist? He told me that none of these symptoms were allergic ones, even though they hit me every, single time I had the foods on my allergy list. Hmmm...do I care if they are officially an allergic reaction, if they make me miserable? No!

- people with celiac disease are more likely to have food intolerances or sensitivities. The only way to determine most of these is keep a food log, of all your foods and your symptoms, and look for correlations. Some reactions may be 24-48 hours later, so you may have to really look for it!

- people with celiac disease seem to be more sensitive to dyes, preservatives, and additives. So he recommends cutting those from the diet.

- people with celiac disease seem to be more sensitive to genetically modified foods - he was seeing abnormal growth patterns in his patients' stomachs that correspond with abnormal growth patterns in rats who are fed genetically modified grains. Organic foods are not allowed to be genetically modified, so he suggested trying to eat that as much as possible.

Before I saw him, I had been cutting foods from my diet by the truckload because I was feeling so sick. Trying to keep track of reactions, still having trouble. After I saw him and his dietician, I found out some of the reasons I was failing, and cut more, and I finally, finally started to feel better. I am now in the place of trying to add foods back into my diet, because I don't have a nutritionally complete diet yet, sigh.

After having gone through this, I would say that these things would be the most helpful if you are trying to find, yourself, what is bothering you...

Try to find THE purest form of any food you eat. One ingredient, make it from scratch, not processed with anything else, ever. My father has celiac disease, and he can eat lots of foods that are, say, made in a factory that also processes wheat, even if they are supposed to be gluten free. The same food makes me sick as a dog. A lot of people seem to have varying levels of sensitivity, so if you are really sensitive, it may take almost nothing to make you very ill. I had to drop oils that were processed with other nuts, flours processed with soy products, etc.... If you can find a few things that aren't processed with almost anything else, that can at least help you make sure you know what food is SAFE. Some things to consider?

- Any powder (baking powder, powdered sugar, etc...) tends to have anti-caking agents to contaminate it, usually corn or potato starches.

- Iodized salt uses corn to stabilize the iodine, so it has that as well (sea salt has no corn contamination, but you have to get big crystals to avoid the anti-caking agents).

- Any meat that has 'retained water' means that it was soaked in a brine, which means you don't know what other ingredients are in that 'retained water.' Any meats that are cut up at the butcher have the potential to be contaminated with other meats, if you are sensitive enough. If you can find a meat that has been cut up in a factory that only processes that meat, it may help. If you are sensitive, you can react to the antibiotic residues that remain in some meats after processing, as well. (I ended up with ground buffalo meat. It's also low fat, not given hormones or antibiotics, and few people seem to develop an allergy to it)

2. To see the results during the food journal, it was helpful to eat the same foods for 2-3 days and then switch to completely different foods for 2-3 days. It spaced the reactions out so I could figure some of this stuff out, like corn. That was in something I would eat, every day, so I couldn't figure it out until I avoided the contamination and ate a bit different. That one gave me joint and muscle pains and all sorts of fun stuff.

3. When you record things in your journal, record the company name or farm name for any food, including fruits and veggies. Some farms may use chemicals that you are reacting to, fertilizers, sprays to ripen fruits, etc... It's amazing what can make you react.

4. And be ready to note everything. For me? I found out the weirdest things. 24 hours after I have corn, I have nerve and joint pain. Sugar cane makes me wake up the next day in a horrifically foul mood, no matter how happy I was when I went to sleep (it's on my allergy list). Citrus gave me headaches. Inhaling certain foods made me sick....if you are sensitive to things, it really takes very little to set you off, but if you keep track, and are very careful, hopefully you can figure out what might be doing this to you!

Or at least eliminate some possibilities so that you can know to look else where. Good luck!

Hi there everyone! I am new to the board so please forgive any mistakes I may make.

I am desperate for help! I will try to sum up quickly what the issues are that I am having.

In 2008 I was admitted through the ER with severe pain in my left side abdomen. It was the worse pain I have ever had and I have 4 kids. I was doubled over in pain and could barely walk. The ER diagnosed me with diverticulitis and admitted me to the hospital.

Everything goes down hill from there. Since then I have had all of the following:

severe abdominal pain sometimes in a specific area but has been all over

nausea

migraines

join pain

fatigue

D and C but mostly D all the time now

dizziness

mucus in my stool

tarry black stool

neon green stool

passing stool with food not absorbed

stool that floats

heartburn

vision problems... blurry, cloudy

exhaustion... the kind that I have to sit and I literally fall out asleep for HOURS

There is more but off the top of my head I can't think of them. I have had 4 cat scans of my abdomen since Aug 09 as well as a colonoscopy and endoscopy which didn't provide much help. They did say that I severe acid reflux and my villi seemed stunted.

I was very angry because it didn't seem the GI dr. was too concerned. I am in CONSTANT pain. I was basically bedridden for almost 6 months and only in the last couple of months have I really made myself get up because things like my daughter's graduation was happening and I was not going to miss it.

I fired the first GI and now have a new one. He has ordered blood work (took 10 viles!) and am waiting on that. In the meantime he wants me to go see my OBGYN to rule out endometriosis. (sp) That appt is this Wed.

In the meantime I have read and researched so much that I put myself on a gluten free diet and I can tell the difference in many of the symptoms but not the pain.

Today I am having a horrible time with bright green poo that is sludge like. I had lots of D last night. :(

I just want to see if anyone has any suggestions? Does it sound like I am even looking in the right area with joining your board?

Thanks so much for any help/suggestions etc! I feel so very alone.

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Northern Celiac Newbie

yes yes yes a thousand times yes. go gluten free and you will feel better. Don't wait for the doctor

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GFinDC Veteran

It would be a good idea to really simplify your diet. Whole foods cooked from scratch at home, limited spices, like salt and pepper. Take a dairy and soy free pro-biotic too. The pepperoni and crackers are not a good choice at this point. You need to put simple whole foods in your body and give it a chance to rest and recover. Remember also that anything you drink, soda, tea, coffee, etc.. needs to be checked.

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    • Aussienae
      I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain. 
    • trents
      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
    • mishyj
      My daughter has celiac disease and has had for a long time. She fell loses strictly gluten-free diet and recently got rid of all cutting boards in any gluten in her house at all. She just had a stool test and it came back showing of gigantic response to gluten in her diet. What could be going on since she doesn't eat any gluten and is very careful about any kind of hidden glue? Help!
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