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New To Celiac Advice Please

thumper

By thumper
in Related Issues & Disorders

Recommended Posts

thumper Apprentice
thumper
Posted

Hi, I am new to celiac only sinse the begining of this week but it has been at least 13 years of symptoms before a doc figured it out to make matters worse is I have a heart condition and my cardiologist has told me straight up that unless I get the diarrhea stopped asap my heart medicines aren't going to work because they are not staying in my body long enough to do what they need to to keep me alive. She told me at this time I am in a foot race with the grim reaper either I get the diarrhea to stop or my heart is going to. I have stopped all gluten this week but am still suffering bad from diarrhea, been rehydrated twice this week and lost 12 pounds, not good....

I WANT TO LIVE !!! Anyone have any good news as to when I can expect to start seeing some relief or some advice as to anything besides my diet I can change to make the diarrhea to stop ? At this point I am open to changing anything to stay alive.

Thanks,

Thumper

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gfcookie Newbie
gfcookie
Posted
Hi, I am new to celiac only sinse the begining of this week but it has been at least 13 years of symptoms before a doc figured it out to make matters worse is I have a heart condition and my cardiologist has told me straight up that unless I get the diarrhea stopped asap my heart medicines aren't going to work because they are not staying in my body long enough to do what they need to to keep me alive. She told me at this time I am in a foot race with the grim reaper either I get the diarrhea to stop or my heart is going to. I have stopped all gluten this week but am still suffering bad from diarrhea, been rehydrated twice this week and lost 12 pounds, not good....

I WANT TO LIVE !!! Anyone have any good news as to when I can expect to start seeing some relief or some advice as to anything besides my diet I can change to make the diarrhea to stop ? At this point I am open to changing anything to stay alive.

Thanks,

Thumper

are you taking anything for it? loperamide/immodium/lomotil? Also, maybe an antispasmoadic would help. what does your GI say? Call one and beg for an appointment ASAP. Also, avoid anything really "fiber-y", like veggies like broccoli, and try some things that are binding, like rice, cheese(if you're not intolerant to lactose or anything), and potatoes. start drinking ensure. you need to see a gastro who will be able to help stop it.

Lisa Mentor
Lisa
Posted

Hello Thumper!

Well, it looks like we have to get you on the fast track! :rolleyes:

Here is a quick start guide:

Open Original Shared Link

This is a list of Safe and Forbidden ingredients:

https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

This is a list of Companies who will always list gluten (as in wheat, barley, malt and rye) on their ingredients list:

Open Original Shared Link

Imodium will help with the diarrhea, but only a gluten free diet will help with the absorption (for your meds as well as food).

For the interim, can you take your meds by injection or sublingually (under the tongue into the blood)?

Start your diet simple. Meats, seafood, rice, potatoes, fresh veggies, and fruit.. Limit seasoning until you understand what to look lfor. Old scratched pots and pans can hide old gluten as can toasters, wooded spoons and cutting boards. And make calls to companyies to make sure that your meds are gluten free.

Here is another list of safe meds:

Open Original Shared Link

All of this may see overwhelming, but it can be done. We are all here to help in any way we can. I think that you will be amazed how you will feel in no time.

Hope this helps.

trents Grand Master
trents
Posted

Thumper,

Many newly diagnosed celiacs are unaware of the many places gluten is hidden in our food supply, medicines (wheat starch is sometimes used as a filler or a binder in pills), personal hygiene products (some mouth washes, tooth pastes, ect.). It's not just enough to avoid macro sources of gluten such as sandwhiches and pasta and pizza. Gluten can be in your salad dressings and your condiments. Wheat is a major ingredient in soy sauce and many vegetable protein based broths. Wheat is used as a texturing agent in spices and snack foods. Be suspicious of anyting you don't cook yourself that has a sause or crusty stuff on it. Do you get the picture? You have to be a dilligent label reader and food dectective. If you aren't sure, don't eat it. If you need clarification about ingredients, email or call the company who made it.

Steve

thumper Apprentice
thumper
Posted
  • Author

Thanks for the information.

I have seen ALL the GI specialists in our area and NONE of them were able to come up with the reason why I was having such severe diarrhea and NO normal bm's over the 13 years this has been going on.

It was my Cardiologist that tripped on the diagnoses of Celiac as a possibility she wants a referral to Mayo while there is still time. My GP wont make the referral necessary and my GI who has washed his hands of me because he is clueless is a dead end (no pun intended). He was the one that years ago suggested imodium to help with the diarrhea and it did work up until about 2 weeks ago when I built up a talerance to it and now it doesn't work at all. None of the meds that any of the GI's in the area prescribed for me ever worked and then the heart condition came on board last year.

Along the way there was some results that suggested Celiac but because not all the test results said Celiac the GI's dismissed it.

So now I am in a race to save my own life and in need of any and all info I can squeeze into my head to stop this before it ends me. It seems the only one that wants me to succeed is my Cardiologist, man I thought doctors took an oath to save lives or do all they could to help not all they could to harm. This just sucks and my bottom is so very sore, I am tired and worn out and pissed that it has come to this but I WANT TO LIVE !!!!!!

This is the second time in my life I ever posted anything on any web anything, I am not very tech savy. So any and all info is so very welcomed and thanks to all in advance.

Thumper

cyberprof Enthusiast
cyberprof
Posted
Thanks for the information.

I have seen ALL the GI specialists in our area and NONE of them were able to come up with the reason why I was having such severe diarrhea and NO normal bm's over the 13 years this has been going on.

It was my Cardiologist that tripped on the diagnoses of Celiac as a possibility she wants a referral to Mayo while there is still time. My GP wont make the referral necessary and my GI who has washed his hands of me because he is clueless is a dead end (no pun intended). He was the one that years ago suggested imodium to help with the diarrhea and it did work up until about 2 weeks ago when I built up a talerance to it and now it doesn't work at all. None of the meds that any of the GI's in the area prescribed for me ever worked and then the heart condition came on board last year.

Along the way there was some results that suggested Celiac but because not all the test results said Celiac the GI's dismissed it.

So now I am in a race to save my own life and in need of any and all info I can squeeze into my head to stop this before it ends me. It seems the only one that wants me to succeed is my Cardiologist, man I thought doctors took an oath to save lives or do all they could to help not all they could to harm. This just sucks and my bottom is so very sore, I am tired and worn out and pissed that it has come to this but I WANT TO LIVE !!!!!!

This is the second time in my life I ever posted anything on any web anything, I am not very tech savy. So any and all info is so very welcomed and thanks to all in advance.

Thumper

Thumper, good for you to look for other ideas. You've been given good advice. Couple thoughts:

*Can your cardiologist call the GP and have a doc-to-doc talk about a referral? Sometimes a doc will only listen to another doc.

*Can you get sub-lingual or IV meds from your cardiologist?

*Have you tried peptobismal? The (non-generic) pepto is gluten-free and may help you hold things in.

*I agree with the plain diet: meat, chicken, rice, baked potatoes, cooked veggies (if they don't make the D worse). Ensure is good. Avoid milk for a while.

*Don't eat out. No fast food (there will be time for that later, after you figure out everything and get healthy). Eat only what you cook with fresh, known ingredients.

I'll say some prayers for you and am sending you good thoughts!

thumper Apprentice
thumper
Posted
  • Author
Thumper, good for you to look for other ideas. You've been given good advice. Couple thoughts:

*Can your cardiologist call the GP and have a doc-to-doc talk about a referral? Sometimes a doc will only listen to another doc.

*Can you get sub-lingual or IV meds from your cardiologist?

*Have you tried peptobismal? The (non-generic) pepto is gluten-free and may help you hold things in.

*I agree with the plain diet: meat, chicken, rice, baked potatoes, cooked veggies (if they don't make the D worse). Ensure is good. Avoid milk for a while.

*Don't eat out. No fast food (there will be time for that later, after you figure out everything and get healthy). Eat only what you cook with fresh, known ingredients.

I'll say some prayers for you and am sending you good thoughts!

My cardiologist did talk to my GP and my GI and now they are both pissed and refuse to do anything.

I received a call from Mayo yesterday and was told that my cardiologist was the only info they received and based on only that info they wont do anything either, they need more info like from my GP and or GI before they would take on my case

Nope my cardiac meds can't be given IV because if they were they would be fatal they are extended release and only through the extended release is what keeps my heart working....

right now I have lost 20 pounds in this short time and going down hill fast, nothing I have tried has slowed or stopped the D.

I will take any and all prayers available. Thank you

Thumper

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RiceGuy Collaborator
RiceGuy
Posted

Are you still eating dairy? If so, I'd suggest dropping it, as many on this board have found dairy also to be a problem, at least at first. Some have been able to add it back after the gut has had time to heal. Other foods might also be a problem, like soy for instance.

As for fiber, I've read that insoluble fiber is what speeds up the passage of food through the digestive tract, while soluble fiber slows it down. So you might consider that when selecting foods, though I suspect that once you figure out what is causing the D, you won't need to compensate with things like that.

HTH

  • 3 weeks later...
DEE BAERTSCH Newbie
DEE BAERTSCH
Posted

I would go to a natureopathic doctor. It sounds like your doctors don't have any ideas to help you, so I think you need new doctors. A natureopathic doctor's focus is to find out what is causing your problem, not just find something to treat the symptoms. The empathy they have to offer and the ability to listen to you to help you resolve your problems is so refreshing, and something that is almost impossible to find in the mainstream community. Alot of clinics now have natureopaths on staff (and generally are covered by your insurance company) because the mainstream medical community has been ignoring their patients and just treating their symptoms with drugs rather than trying to figure out what is causing the problem. I guarantee that a good natureopath will get you turned around right away.

I also suspect that you have not totally eliminated gluten from your diet. It's challenging: research this web site to get the gluten free foods as well as a list of the things that have hidden gluten; they are many & varied. And get to a good health food store to get stocked up right away on gluten free foods. You might have other food intolerances; the natureopath will probably have you go on the allergen elimination diet to find out if anything else is compounding your problems.

You also need to start taking probiotics right away; you need to get the good bacteria back in your stomach. You are probably deficient in many vitamins & minerals as well; that will need to be a part of your workup. Where do you live? Good Luck,

Dee

DEE BAERTSCH Newbie
DEE BAERTSCH
Posted

Hi again;

I just realized I didn't delete the where do you live. The only reason I asked is because you were talking about going to Mayo Clinic; Rochester, MN, I assume. If you live anywhere near there, I know of a good natureopath in Billings, MT that I could refer you to. Natureopath's can be hard to find.

Dee

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