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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Dee777

I Might Be An Idiot, But I Am Desperate...

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Yes, I do order them online. Custom Probiotics in CA. (I am not a saleswoman, I swear!) :D A book written by a gastro doctor lists them as ones he recommends to his patients. Then, someone on here said she used them.

I have used other brands during the last 2 years and did not feel they did a darn thing for me. (perhaps avoiding the gluten AND taking them was the key.)

I emailed the owner and I spoke to him on the phone too--about my condition--- and he asked me a few questions and then, told me which ones to use and sent me a bunch of interesting research on celiac. He suffered for years with gastro stuff, candida and h. pylori himself. He's a chemist and developed the probiotics. Just a suggestion.

Hey, you're the 4th person I met in recent weeks on here from a small town in Canada! :)

I agree with Raven...

I would definitely go to the appointment and tell him what's been going on. See what he has to say. I've met more than my share of doctors in the last few years and the "friendliest" and most "awesome" doctor I saw last year (my first impression) was also the most negligent :angry: (long story) .....as my hubby says, we don't have to like them, they just have to solve the damn problem. :lol:

Please continue the probiotics. They take a few months to balance that gut flora. You'd be surprised what gets dispersed before "flushing out". Powder ones --mixed in water--may be more suitable for you.

Good luck, hon. I know you are suffering. Let us know what happens.

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Yes, I do order them online. Custom Probiotics in CA. (I am not a saleswoman, I swear!) :D A book written by a gastro doctor lists them as ones he recommends to his patients. Then, someone on here said she used them.

I have used other brands during the last 2 years and did not feel they did a darn thing for me. (perhaps avoiding the gluten AND taking them was the key.)

I emailed the owner and I spoke to him on the phone too--about my condition--- and he asked me a few questions and then, told me which ones to use and sent me a bunch of interesting research on celiac. He suffered for years with gastro stuff, candida and h. pylori himself. He's a chemist and developed the probiotics. Just a suggestion.

Hey, you're the 4th person I met in recent weeks on here from a small town in Canada! :)

I agree with Raven...

I would definitely go to the appointment and tell him what's been going on. See what he has to say. I've met more than my share of doctors in the last few years and the "friendliest" and most "awesome" doctor I saw last year (my first impression) was also the most negligent :angry: (long story) .....as my hubby says, we don't have to like them, they just have to solve the damn problem. :lol:

Please continue the probiotics. They take a few months to balance that gut flora. You'd be surprised what gets dispersed before "flushing out". Powder ones --mixed in water--may be more suitable for you.

Good luck, hon. I know you are suffering. Let us know what happens.

Well. Here's the update, and I didn't like it one bit!

I spent a total of 15 minutes with the "specialist" yesterday. He poked and prodded my abdomen for about 1 minute, took my blood pressure and told me I am to stop everything and take the Imodium (which I told him doesn't work for me at all). This includes the probiotics. He insists I am getting CC. How can that be when I am consuming clear fluids only. Sprite from the bottle, purified water from a bottle, no tea, coffee or alcoholic beverages. No soup. I had IV fluid therapy and this made it worse. Ah well. He thinks I am having a bout of CC? Then I am going to my doctor today and demanding a blood test to see what that has to say. Eat, he tells me. Eat anything that has no gluten. Right. I can't even drink a glass of water without sitting in my bathroom and wasting a half hour of my life in there :( And then to make matters worse, the good doctor scheduled me for a gastroscopy. For September 22. The way things are going now and the rate I am losing weight, I will be dead by then.

Wow, I didn't realize I had all that rage built up LOL Sorry, guys! I think it could be a combination of hunger and the fact that I am scheduled by my GP to have an abdominal ultrasound this morning. I am so getting tired of doctors and tests and I am certain this is only the beginning!

Anyway just wanted to update! Going to check out the probiotics company today, thanks for the info!

Dee

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Glad your doctor was able to get you in. Sometimes the doctors with the worst bedside manners are the best at figuring out what is going on. Hopefully that will be the case for you. I do hope you are feeling alot better soon.

Thank you, Ravenwoodglass!

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Well. Here's the update, and I didn't like it one bit!

I spent a total of 15 minutes with the "specialist" yesterday. He poked and prodded my abdomen for about 1 minute, took my blood pressure and told me I am to stop everything and take the Imodium (which I told him doesn't work for me at all). This includes the probiotics. He insists I am getting CC. How can that be when I am consuming clear fluids only. Sprite from the bottle, purified water from a bottle, no tea, coffee or alcoholic beverages. No soup. I had IV fluid therapy and this made it worse. Ah well. He thinks I am having a bout of CC? Then I am going to my doctor today and demanding a blood test to see what that has to say. Eat, he tells me. Eat anything that has no gluten. Right. I can't even drink a glass of water without sitting in my bathroom and wasting a half hour of my life in there :( And then to make matters worse, the good doctor scheduled me for a gastroscopy. For September 22. The way things are going now and the rate I am losing weight, I will be dead by then.

Wow, I didn't realize I had all that rage built up LOL Sorry, guys! I think it could be a combination of hunger and the fact that I am scheduled by my GP to have an abdominal ultrasound this morning. I am so getting tired of doctors and tests and I am certain this is only the beginning!

Anyway just wanted to update! Going to check out the probiotics company today, thanks for the info!

Dee

Dee,

Don't be sorry about venting your anger!! WE GET IT!! I had so much pent up rage about doctors not helping me and I let it out finally and I feel a LOT better! :) Vent to me anytime you want to!

I know exactly how you feel. I used to scream and cry (before going gluten-free and stopping the diarrhea and weight loss) that "I'll be dead before they figure this out!!". They didn't figure it out---I did!

Immodium is just more symptom treating. How does that solve your problem??

Stop drinking sprite!! Sugars or HFCS may be causing trouble. (Sorry, but it's true)

Stick to plain, filtered water. If you get ditzy, you are dehydrated again. Drink the water with salt/sugar ratio I describe above.

Try clear gluten-free broth. Brown rice. Boiled chicken.

Why should you stop the probiotics?? They will not hurt you. They are naturally occurring in your human body and constant diarrhea signals an imbalance of the gut flora. (arrgh! some doctor are idiots)

Oh Dee, This is exactly what happened to me. I lost a drastic 90 lbs. and got the same rap you are getting. Take this antacid, take this anti-depressant (HUH?! :blink: ), have an ultrasound, a small bowel follow-through....blah blah blah.

Okay....let's say he's right (just for conversation sake...)

How could you possibly be getting CCed? Do you take any vitamins or supplements? Are your house and your family members gluten-free? Pots, pans, kitchen cutting boards--all checked? Just thinking aloud here...

Maybe the ultrasound will reveal something. :unsure: Let me know! Hang in there and EAT plain food and drink WATER. You have to eat, hon!

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Okay....let's say he's right (just for conversation sake...)

How could you possibly be getting CCed? Do you take any vitamins or supplements? Are your house and your family members gluten-free? Pots, pans, kitchen cutting boards--all checked? Just thinking aloud here...

Maybe the ultrasound will reveal something. :unsure: Let me know! Hang in there and EAT plain food and drink WATER. You have to eat, hon!

Dee, I am so sorry the appointment didn't go well. I think many of us have had the same disappointment and anger with doctors. I have been diagnosed since 2002 and still don't trust them.

I agree with Irish, you need to eat period. Even if it goes right through you. Plain food, perhaps plain baked or sweet potatoes and plain broiled chicken or fish, very well cooked plain fruit or veggies etc.

I am assuming they have done stool testing to make sure you don't have a lingering food poisoning or C diff, if not call and demand to pick up a stool testing kit.

You also may want to call the specialists office and ask to be put on the cancellation list then call daily to see if someone has cancelled so they can get you in sooner. You could also try having your GP call and stress how ill you are as sometimes they can give the specialist the nudge needed to speed things up. My old GP did that and they had me in for a colonoscopy the next day, too bad they didn't do an endo at the same time as it took 4 more years for me to be diagnosed.

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Hey, Irish and Raven;

Thought I would reply to you both at the same time, I haven't been online much been so very tired. Irish, I made your yucky solution and have been drinking it faithfully. Alternating between that and water. Sleeping so much I am very tired the past few days. I had my ultrasound Friday and my doctor should have my results tomorrow or Wednesday. Hopefully the stool results are in before Wednesday as I have an appointment with my GP that morning. I am not leaving his office without something that stops the D. Imodium doesn't do it. I have been eating the brown rice and boiled (blech) chicken breast in small amounts at a time. I can't retain anything longer than five minutes. As soon as I swallow my guts start rumbling and gurgling and then whoosh. Ah well. Thank you both for your comments, advice, just for being there. Sometimes I just want to curl into a ball in my bed and cry. I got out of bed this morning and swept the kitchen floor and felt like I ran a marathon, went back to bed and slept for 2 hours.

OK enough whining lol I am going to see if I can sit and be social with my husband for a bit tonight before he forgets he has a wife at all, I've been absolutely no fun to be around the past 5 weeks or so! Thank you both again... will try to come on tomorrow and anser your questions about the cross contamination etc. Just too tired tonight! Take care you guys!

Dee

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Hi Dee,

Have you tried not eating the rice? You could eat veggies and meat instead. Fry some onions and okra and mushrooms with some ham or chicken etc. We can have intolerances to any food, and rice is just as likely a problem as any other food.

Also check your vitamins and meds for gluten and dairy and soy.

You may be conditioned to rely on the Immodium. If you have taken it a long time. your body may need to taper off it to get back to normal.

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Hi Dee,

Have you tried not eating the rice? You could eat veggies and meat instead. Fry some onions and okra and mushrooms with some ham or chicken etc. We can have intolerances to any food, and rice is just as likely a problem as any other food.

Also check your vitamins and meds for gluten and dairy and soy.

You may be conditioned to rely on the Immodium. If you have taken it a long time. your body may need to taper off it to get back to normal.

Thank you, GFinDC.

I actually was tossing this around in my mind at 3:00 this morning lol. I thought maybe I would just lay off everything grain or flour and stick to just meat, fish, vegetables and fruit, simple whole foods for a bit and see if that might make a difference? I am going to start with that today, see how it goes. If that is the culprit then so be it. I just want some relief!

Thank you for your input, you are all coming up with ideas and suggestions that are most helpful to me. I have been taking the Imodium sporadically since February, mostly when I have to go out somewhere but in all honesty it doesn't do anything for me anyway so I am not going to bother with it anymore either. I do have Lomotil, but rarely take it either. As for the dairy I haven't had anything dairy since the D started and as for soy I will start checking labels for that too!

You people are the best!

Dee

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Hey, Irish and Raven;

Thought I would reply to you both at the same time, I haven't been online much been so very tired. Irish, I made your yucky solution and have been drinking it faithfully. Alternating between that and water. Sleeping so much I am very tired the past few days. I had my ultrasound Friday and my doctor should have my results tomorrow or Wednesday. Hopefully the stool results are in before Wednesday as I have an appointment with my GP that morning. I am not leaving his office without something that stops the D. Imodium doesn't do it. I have been eating the brown rice and boiled (blech) chicken breast in small amounts at a time. I can't retain anything longer than five minutes. As soon as I swallow my guts start rumbling and gurgling and then whoosh. Ah well. Thank you both for your comments, advice, just for being there. Sometimes I just want to curl into a ball in my bed and cry. I got out of bed this morning and swept the kitchen floor and felt like I ran a marathon, went back to bed and slept for 2 hours.

OK enough whining lol I am going to see if I can sit and be social with my husband for a bit tonight before he forgets he has a wife at all, I've been absolutely no fun to be around the past 5 weeks or so! Thank you both again... will try to come on tomorrow and anser your questions about the cross contamination etc. Just too tired tonight! Take care you guys!

Dee

Dee,

You don't need to drink that solution all the time! Just when you feel a bit spacey--when your electrolytes are off.

You are not whining, hon! You're venting and it is so hard to feel "cheery" when you've got nothing left inside. No apologies! As for cross contamination, well, that may be an issue. Check your kitchen, etc. carefully. Make sure the probiotics are not dairy-based.

I suspect you may be dealing with something else going on, if you are not eating anything more than what you tell us. Chicken and rice are rarely problematic foods, but it is possible that you have a problem with grains or chicken. However, your diarrhea has been non-stop --no matter what you eat--and that MIGHT mean an infection of some kind.

I would avoid anything FRIED right now. :unsure:

It sounds like your GI tract is pretty grouchy.

Hopefully, the stool testing will reveal something. Mine showed a total lack of GOOD bacteria, which is baffling because at that time, I had been using probiotics. The conclusion was (months later) that they were insufficient in the face of my gluten consumption and a major leaky gut(I was still undiagnosed at the time).

I continued to have bouts of D the first 3 months after being gluten-free..but now, it is gone.

I pray you get some REAL answers soon. I really feel for you, kiddo. I remember all too well what this feels like and I want you to feel better soon.

Keep us posted!!

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Wow! I thought my big D was bad! I am praying that you find out what is wrong really soon! Keep your chin up (whoever thought of that statement?)We are all thinking of you I am sure. Terri O

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O Mighty Wise Ones, here is an update...

I just got home from a visit to my GP. Sigh. The man has patience, I will give him that. So my stool samples all came back... normal. My abdominal ultrasound came back... normal. Still have the Big D, we're talking Niagara Falls action. Yesterday I started eating very plain stuff. Small spoonful of plain cooked potato. Half a cooked carrot. The guts didn't seem to be as growly, but still Big D doesn't want to go away. Lots of fluids, and drinking Irish's magic elixir when required :)

However. The GP asked me today about the visit to the gastroenterologist and when I told him he booked me for an endoscopy for the 22 of September he was MAD. So, I asked him why am I not responding to Lomotil or Imodium? His answer was he believes that there is too much inflammation. I am not a doctor, so I just nodded sagely and let him write on my file. Then he told me he wants me to go have the Celiac blood panel done tomorrow morning, and then to start on prednisone. Prednisone frightens me... is there anything else you people know of that would reduce inflammation besides that? Goodness of course as soon as I get home, I turned on the computer and Googled "intestinal inflammation" and "celiac disease uncontrolled by diet" and one of the thigns that pops up? Lymphoma. If the prednisone wasn't bad enough, and having the D for almost 6 weeks straight, the doctors, the exhaustion, not being able to eat, being hungry all the time... I am not ashamed to say I've been in tears the last hour. Ah, I am sorry if this post is all over the place right now. I am highly emotional at the moment (this is also something new to me, I am normally very level headed and a methodical person) and I guess the moment is just running away with me :)

Anyway, thanks for listening... or reading, I guess. Nice to know there are others out there who have an idea of what this is all about.

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honestly, i normally don't treat my D, as bad as that sounds. I let it 'run its course'. All of the medications i have taken either end me up at the opposite end of the D :( or feeling much worse.

Eat some cheese, that is my normal go to food when i have D. Normally Mild Chedder.

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O Mighty Wise Ones, here is an update...

I just got home from a visit to my GP. Sigh. The man has patience, I will give him that. So my stool samples all came back... normal. My abdominal ultrasound came back... normal. Still have the Big D, we're talking Niagara Falls action. Yesterday I started eating very plain stuff. Small spoonful of plain cooked potato. Half a cooked carrot. The guts didn't seem to be as growly, but still Big D doesn't want to go away. Lots of fluids, and drinking Irish's magic elixir when required :)

However. The GP asked me today about the visit to the gastroenterologist and when I told him he booked me for an endoscopy for the 22 of September he was MAD. So, I asked him why am I not responding to Lomotil or Imodium? His answer was he believes that there is too much inflammation. I am not a doctor, so I just nodded sagely and let him write on my file. Then he told me he wants me to go have the Celiac blood panel done tomorrow morning, and then to start on prednisone. Prednisone frightens me... is there anything else you people know of that would reduce inflammation besides that? Goodness of course as soon as I get home, I turned on the computer and Googled "intestinal inflammation" and "celiac disease uncontrolled by diet" and one of the thigns that pops up? Lymphoma. If the prednisone wasn't bad enough, and having the D for almost 6 weeks straight, the doctors, the exhaustion, not being able to eat, being hungry all the time... I am not ashamed to say I've been in tears the last hour. Ah, I am sorry if this post is all over the place right now. I am highly emotional at the moment (this is also something new to me, I am normally very level headed and a methodical person) and I guess the moment is just running away with me :)

Anyway, thanks for listening... or reading, I guess. Nice to know there are others out there who have an idea of what this is all about.

From one "normally level-headed and methodical person" to another :) ....let me say this. Constant D, fatigue and frustration, inflammation from celiac, loss of nutrients and (I am sure) anemia, etc. (have they checked you for that, by the way?) will make even the most sane, calm person feel overwhelmed, scared and frantic. Been there, hon. Stress will exacerbate symptoms, so as stupid as this will sound, try to stay calm. My first few months gluten-free were awful. I was worried it "wasn't working". I had MEGA inflammation from celiac. My mouth to my rectum was swollen and BURNING. It is starting to calm down. On a scale of 1-10, with 10 being "just kill me now" back in December, I am a 5 now. I no longer carry Immodium or antacids with me and I have normal BMs. Hate to be graphic, but this is what it is.

Healing happens, it just takes a long time, dammit!

That said, I think I know how you feel. :(

However, I am thinking your doctor is checking for antibodies to see if you are responding to the gluten free diet. At least he is on top of this and seems to want to help!

I do not understand why an endoscopy is scheduled for September either? :blink: What is it for?

It is GOOD your stool samples and scans were normal. (even though it seems like a non-answer) Scans are used to rule out malignancies and it appears you do not have any intestinal bugs, parasites, yeast etc. That is actually good news!!

In all of this, I never asked you...how long have you been gluten-free? Are you SURE there's no way you are getting CCed?

Don't let your brain go to lymphoma! If you had cancer, your white blood cell count would be off. What does your blood work reveal?

Prednisone is given in short courses for serious inflammation. Personally, I would be careful of taking too much. It has side effects and upsets the gut flora even more. Doctors never tell you this stuff. They symptom treat in an effort to give you relief. If you take it, and it works, FANTASTIC! I would keep taking the gluten-free, dairy-free probiotics. (just my opinion--it has made a huge difference in me) they cannot hurt you.

I hate to keep harping on the CC issue but you cannot imagine how a small amount can wreak havoc and keep that attack on your gut going.

Don't take in anything except pure water, pure foods. Are you taking vitamins? Are they gluten-free, DF??

Do NOT eat cheese. (sorry to disagree with the previous poster, but dairy isn't going to stop your diarrhea !! Cheese often acts as a temporary "glue"--ah, the "magic of casein") Blunted villi do not produce lactase, so digesting lactose will be difficult.

Is anyone in your house still eating gluten? That may be the key.

Okay. Let me know what happens....stay strong. It's going to be all right! ;) I'm here for ya!

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From one "normally level-headed and methodical person" to another :) ....let me say this. Constant D, fatigue and frustration, inflammation from celiac, loss of nutrients and (I am sure) anemia, etc. (have they checked you for that, by the way?) will make even the most sane, calm person feel overwhelmed, scared and frantic. Been there, hon. Stress will exacerbate symptoms, so as stupid as this will sound, try to stay calm. My first few months gluten-free were awful. I was worried it "wasn't working". I had MEGA inflammation from celiac. My mouth to my rectum was swollen and BURNING. It is starting to calm down. On a scale of 1-10, with 10 being "just kill me now" back in December, I am a 5 now. I no longer carry Immodium or antacids with me and I have normal BMs. Hate to be graphic, but this is what it is.

Healing happens, it just takes a long time, dammit!

That said, I think I know how you feel. :(

However, I am thinking your doctor is checking for antibodies to see if you are responding to the gluten free diet. At least he is on top of this and seems to want to help!

I do not understand why an endoscopy is scheduled for September either? :blink: What is it for?

It is GOOD your stool samples and scans were normal. (even though it seems like a non-answer) Scans are used to rule out malignancies and it appears you do not have any intestinal bugs, parasites, yeast etc. That is actually good news!!

In all of this, I never asked you...how long have you been gluten-free? Are you SURE there's no way you are getting CCed?

Don't let your brain go to lymphoma! If you had cancer, your white blood cell count would be off. What does your blood work reveal?

Prednisone is given in short courses for serious inflammation. Personally, I would be careful of taking too much. It has side effects and upsets the gut flora even more. Doctors never tell you this stuff. They symptom treat in an effort to give you relief. If you take it, and it works, FANTASTIC! I would keep taking the gluten-free, dairy-free probiotics. (just my opinion--it has made a huge difference in me) they cannot hurt you.

I hate to keep harping on the CC issue but you cannot imagine how a small amount can wreak havoc and keep that attack on your gut going.

Don't take in anything except pure water, pure foods. Are you taking vitamins? Are they gluten-free, DF??

Do NOT eat cheese. (sorry to disagree with the previous poster, but dairy isn't going to stop your diarrhea !! Cheese often acts as a temporary "glue"--ah, the "magic of casein") Blunted villi do not produce lactase, so digesting lactose will be difficult.

Is anyone in your house still eating gluten? That may be the key.

Okay. Let me know what happens....stay strong. It's going to be all right! ;) I'm here for ya!

Good morning!

Well, I'm trying to make it be a good morning :) Regarding your questions, Irish:

Blood work WBC counts are normal. I am a little on the anemic side.

The probiotics I am taking say they are gluten and dairy free.

I am absolutely anal (pun certainly intended) about keeping my kitchen gluten-free, but as my DH is not gluten-free I suppose anything is possible. I store my gluten-free food in a place separate from his food, prepare my foods in a separate area than he does, I have a separate toaster etc.... do not use wooden utensils or cutting boards. A lot of our main meals together are supper, and for that I make a gluten-free meal mainly vegetables and meat. If I make him a gravy to go with the meat it is thickened with gluten-free flour or starch.

As for the gastroscopy in September, my GP is as puzzled as you and I are... He sees no reason for it and outright asked me what the heck he is trying to prove with THAT one? My GP also told me he will be working on trying to get me in to see another specialist for another opinion. I told him I was really not worried about seeing another one but he says it is best to make sure he isn't missing something.

I truly am leery about the prednisone, and am thinking I might put it off for a few days I am not certain. I am a big baby when it comes to taking meds!

As for what I have been putting into myself:

I HAD been on vitamins up until about 3 weeks ago, Centrum adult chewables. They are gluten-free.

Eating whole foods (by this I mean plain boiled potatoes, carrots, chicken breast... really boring bland stuff) and I completely stopped rice (white and brown), and anything containing any type of grain for the last few days and I THINK this is making a difference. I still have the big D, BUT I don't have the ache anymore when my intestine grumbles and growls at me, so it is the lack of pain that I am taking as a positive reaction to the elimination to grains and flours. It is for this reason I am hopeful that I will be able to maybe settle things without the prednisone. I will give it a couple days and see if there is any improvement.

Oh, I am so new at this and I feel absolutely stupid about it all lol.

And also I have been eating gluten-free since the day my GP told me the test results which was January 25 of this year. I wish I had had a nice big gluten loaded BLT right before my appointment :) A triple decker...

I appreciate your advice Irish and your humor makes me giggle and sometimes outright laugh. Just wanted you to know that you have managed to make a difference to someone out in this wild vastness called the Web!

Raven, your advice is also very much appreciated and I am learning so much from the both of you, in fact from everyone here. So grateful to have stumbled in here! You all have a fabulous day, I am going to go ingest some filtered water and a nice ripe banana and call it breakfast!

Dee

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honestly, i normally don't treat my D, as bad as that sounds. I let it 'run its course'. All of the medications i have taken either end me up at the opposite end of the D :( or feeling much worse.

Eat some cheese, that is my normal go to food when i have D. Normally Mild Chedder.

Thank you for taking the time to reply, Shadowicewolf! Unfortunately I do appear to be lactose intolerant and so the cheese probably wouldn't be a good thing for me at this time. But I do thank you for trying LOL I know about cheddar's binding properties, one of my children stole a block of it out of my fridge when she was about 4 years old and had a little snack... a half pound snack lol. She was plugged up for DAYS! She learned a good lesson that time :)

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Thank you for taking the time to reply, Shadowicewolf! Unfortunately I do appear to be lactose intolerant and so the cheese probably wouldn't be a good thing for me at this time. But I do thank you for trying LOL I know about cheddar's binding properties, one of my children stole a block of it out of my fridge when she was about 4 years old and had a little snack... a half pound snack lol. She was plugged up for DAYS! She learned a good lesson that time :)

Wow. Thats terrible :( Cheese is my go to food (chedder). I know that it is lactose free as is some other cheeses.

Another thing i have found that helps a little is sweet potatos. I don't know why but sometimes they help.

No problem :) i like to help others.

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I think I might just run out and buy me a sweet potato for supper tonight then! DH voiced a desire for chili so am surprising him with that, but I don't think I am quite up for that yet :-)

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Hi Dee,

I wouldn't be worried about trying the Prednisone for a little while. It is supposed to calm down the immune system so it might help. Might be a way to get you kick started on healing a little faster. You did test clean of parasites though right? Prednisone wouldn't be good if there were parasites involved. It can make your face kind of puffy so just be aware of that.

Sweet potatoes seem to be well tolerated per the posts I have seen on this board. I know they do ok by me. They can make a nice soup base too if they are well cooked and mashed up. Much better for you than regular potatoes.

Have you tried any canned fruit? Like pears or peaches? Those might go down well too.

There are some people on the board who go completely grain free and it helps them. So you might be on to something there. :)

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Wow. Thats terrible :( Cheese is my go to food (chedder). I know that it is lactose free as is some other cheeses.

Another thing i have found that helps a little is sweet potatos. I don't know why but sometimes they help.

No problem :) i like to help others.

I stand corrected and humbly apologize. I thought cheddar had lactose...well, it does, but it is very low, I see. wow!I did not know that!

Good to know ...as cheddar cheese is one of my favorites and as soon as my stomach allows, I'll be having a big ole chunk! I MISS my cheese!! :) I miss that more than gluten.

I keep learning every day!! :)

YES! Sweet potatoes or yams. Good for you! I bake yams in their jackets in the oven and they are incredibly sweet. Poke a few holes in them and put them in a pie plate as they ooze...hope they go down smoothly for you, Dee!

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Regarding your questions, Irish:

Blood work WBC counts are normal. I am a little on the anemic side.

Oh, I am so new at this and I feel absolutely stupid about it all lol.

And also I have been eating gluten-free since the day my GP told me the test results which was January 25 of this year. I wish I had had a nice big gluten loaded BLT right before my appointment :) A triple decker...

I appreciate your advice Irish and your humor makes me giggle and sometimes outright laugh. Just wanted you to know that you have managed to make a difference to someone out in this wild vastness called the Web!

Dee

My sense of humor kept me alive. Seriously. Without it, I surely would have gone stark raving mad.

Glad I could help by making you smile. Nothing about this is very funny at all, yet for some reason, we all find a way to laugh. Self-preservation, perhaps!

My gut instincts (pun intended) ;) told me you might be anemic. What KIND of anemia is it? Both B-12 and folate anemia as well as iron deficiency anemia are common in celiacs. What are you taking for that, may I ask?

Don't feel stupid. All any doctor tells us is go gluten free. ya, I got that part, dude...what else ya got?! Everything I learned, I learned on here, on the internet, from a cousin with celiac disease and by reading several books. I researched my brains out (no easy task the way I was so sick and out of it for 3 years. I was lost in space and had trouble comprehending info )... and I saved my own life. No doctor helped me and I saw dozens.

The single most important thing is knowing what follow up testing needs to be done. Be your own best advocate. Vitamin levels, a CBC, Thyroid hormones and bone density scans are absolutely essential. My bone density suffered in just 18 months while I was still undiagnosed and that is scary!

I had a BLT the other day on gluten-free toast and it was awesome...you'll get there, too. I couldn't have eaten that a few months ago without doing you know what.....whoosh!!!

Okay, hope you feel better soon! Let us know!

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I hope you find relief. I haven't been on prednisone, but my girlfriend has been on and off it many times. She said that you get a big burst of energy! So that may be a good thing temporarily! They'll wean you off from it, it will be really important to follow the time lines and dosages.

Sweet potatoes are great! Avacodo's seem to be pretty neutral too. That's a fruit vs. veggie, but has good fat and doesn't seem to irritate the gut. (I don't know how available they are in your small town though.)

One other thing that helped me when it seemed like everything I ate gave me "d", was to eat things I'd rarely or never eaten before, and to try to rotate foods. I don't know if that will help you, but I imagine that at this point you are willing to try anything...

Please let us know how you're doing.

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I stand corrected and humbly apologize. I thought cheddar had lactose...well, it does, but it is very low, I see. wow!I did not know that!

Good to know ...as cheddar cheese is one of my favorites and as soon as my stomach allows, I'll be having a big ole chunk! I MISS my cheese!! :) I miss that more than gluten.

I keep learning every day!! :)

YES! Sweet potatoes or yams. Good for you! I bake yams in their jackets in the oven and they are incredibly sweet. Poke a few holes in them and put them in a pie plate as they ooze...hope they go down smoothly for you, Dee!

Its fine :) that was one of the foods i thought i would have to loose and i started reading lables and was surprised to find that it didn't have stuff in it that i couldn't have. Its my go to snack food as well (partially a habit picked up from my grandmother who has lots of food allergies, she always kept a block on hand).

Sweet potatos are one of my all time favorites. Depending on how 'sweet' the potato is already i sometimes only add a litle cinnimon (also good for you) or honey or (if i'm feeling well) brown sugar. You can also cook them in the microwave for about 5 minutes or so.

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Hello, everyone;

Just wanted to stop in quickly as I haven't done so for a few days. Not that I don't think about you all but my goodness when I'm not trying to keep up with my daily things I'm sleeping :)

The anemia is being catered to a la my local hospital. I go in for IV therapy as an outpatient. I have no clue what they are sticking me with but I was starting to feel slightly better. THEN, as I mentioned, the prednisone thing really freaked me out a LOT. I was desperate. So...

I went to my local friendly pharmacist who ordered me in some (apparently) very, very good probiotics. These babies work out to be $5.00 per DOSE! Wow. So, a 10 dose box was $50.00 (obviously) and holy cow, I just finished my 6th dose and I can honestly say I managed to eat my husband's birthday supper at my daughter's home last night without too much grief! I don't need to look for the nearest bathroom at all times and calculate the time to the nearest millisecond it would take me to get in there and in position!

They are called VSL #3, I have read the controversy on the sweetener that it may / may not have gluten and decided to take my chances with this box and to be honest it is improving how I feel. I will, however, order the unflavored version today and discuss with my pharmacist why he ordered that kind for me when he knows I have celiac. Unless he believes there is no risk of being glutened. Will let you all know the outcome.

Bless you all and I hope you all have a marvelous day!

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Hello, everyone;

Just wanted to stop in quickly as I haven't done so for a few days. Not that I don't think about you all but my goodness when I'm not trying to keep up with my daily things I'm sleeping :)

The anemia is being catered to a la my local hospital. I go in for IV therapy as an outpatient. I have no clue what they are sticking me with but I was starting to feel slightly better. THEN, as I mentioned, the prednisone thing really freaked me out a LOT. I was desperate. So...

I went to my local friendly pharmacist who ordered me in some (apparently) very, very good probiotics. These babies work out to be $5.00 per DOSE! Wow. So, a 10 dose box was $50.00 (obviously) and holy cow, I just finished my 6th dose and I can honestly say I managed to eat my husband's birthday supper at my daughter's home last night without too much grief! I don't need to look for the nearest bathroom at all times and calculate the time to the nearest millisecond it would take me to get in there and in position!

They are called VSL #3, I have read the controversy on the sweetener that it may / may not have gluten and decided to take my chances with this box and to be honest it is improving how I feel. I will, however, order the unflavored version today and discuss with my pharmacist why he ordered that kind for me when he knows I have celiac. Unless he believes there is no risk of being glutened. Will let you all know the outcome.

Bless you all and I hope you all have a marvelous day!

ASK what they are giving you intravenously as it is important and I am curious! ;)

And YES!!! probiotics to the rescue!!Yaayy!! Hooray and I hope your bowel issues continue to resolve. You do "sound " better :lol:

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I will find out for you Irish! A bit of a setback today, just a bit more D than the past few days. I was wondering do you think it was because I was a bit late in taking my probiotic? And do you know how long before I can expect the D to "bulk up"? Sorry to sound so descriptive but its still somewhat watery :-) Oh my I so never expected to ever have so many poop conversations lol

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