Just Found Out About This After 10 Years Of Pain

[Guest ohiodad]

Greetings everyone,

I am new here, I didn't even know this existed until yesterday. I am a 36 year old man, have been dealing with constant diarrhea on a daily basis, sometimes 8 to 10 times a day, lower abdominal cramps so bad they double me over at times, gas that smells like sulfur, bright yellow stool, and quivering bowels, low energy lvls, want to sleep constantly, enamel almost gone from teeth, constant sounds from my stomach, always a bad taste in my mouth even right after brushing and mouthwash, always itching but nothing there, a constant always there pain in my belly that I can't get rid of amung other problems.

I apologize for the run on, but I am desperately seeking answers. This has been in my life for at least over 10 years. Am I just gettin old, or is this sound like I may have this problem?

[gdobson]

You sound like one of us.

I was sick for over 10 years and had 2 miscarriages before I found out what was wrong. Luckily my son did not have to suffer as long.

Have you brought this up to your doctor? Unfortunately, they don't usually think of it on their own. Or are you just going to try a diet change to see if that helps you?

Best of luck to feeling better.

Gina

[buffettbride]

Welcome. I'm glad you found this site. It is soooooo helpful.

Based on your symptoms, it definitely sounds like you could have Celiac Disease. Have you talked about it with your doctor?

I certainly hope you find a way to feel better soon!

[Guest ohiodad]

You sound like one of us.

I was sick for over 10 years and had 2 miscarriages before I found out what was wrong. Luckily my son did not have to suffer as long.

Have you brought this up to your doctor? Unfortunately, they don't usually think of it on their own. Or are you just going to try a diet change to see if that helps you?

Best of luck to feeling better.

Gina

My wife said I should just change my diet and see if that helps first. Do you think that is a good idea?

[Guest ohiodad]

Is there information on what I should look for on product labels and such to help me stay away from this? I mean searching through the sites I have seen today, there is alot I can't eat. Do I go Vegitarian?

[DingoGirl]

My wife said I should just change my diet and see if that helps first. Do you think that is a good idea?

Hi there,

You absolutely sound like one of us! It's very good that you found this forum, this is where nearly all of us learn everything.

Change your diet immediately, and you should know within just a few days. Go off all wheat and grains immediately, and eat foods in their purest form - - meat, chicken, fish, fresh ot steamed veggies and fruits, pure seasonings (salt, pepper, herb, fresh garlic), rice, and reduce dairy, limiting it to aged cheeses and maybe a little milk in your coffee. You'll learn that there is hidden gluten in many, many things.....so you'll have to watch that - soy sauce is made with wheat, and gluten can be in your toiletries, salad dressings, seasoning mixes, toothpaste, all kinds of things. Sticking to foods in their purest forms will avoid hidden gluten.

And consider yourself very lucky that you found out about this at 36 instead of....mid-forties, or sixties, or....never, like most sufferers.

Ask any questions you like! And let us know how you're feeling.

oh, BTW, if you DO decide to get blood tests/ endoscopy, etc., you'll have to KEEP eating gluten so the results will be accurate.

[Guest ohiodad]

Hi there,

You absolutely sound like one of us! It's very good that you found this forum, this is where nearly all of us learn everything.

Change your diet immediately, and you should know within just a few days. Go off all wheat and grains immediately, and eat foods in their purest form - - meat, chicken, fish, fresh ot steamed veggies and fruits, pure seasonings (salt, pepper, herb, fresh garlic), rice, and reduce dairy, limiting it to aged cheeses and maybe a little milk in your coffee. You'll learn that there is hidden gluten in many, many things.....so you'll have to watch that - soy sauce is made with wheat, and gluten can be in your toiletries, salad dressings, seasoning mixes, toothpaste, all kinds of things. Sticking to foods in their purest forms will avoid hidden gluten.

And consider yourself very lucky that you found out about this at 36 instead of....mid-forties, or sixties, or....never, like most sufferers.

Ask any questions you like! And let us know how you're feeling.

oh, BTW, if you DO decide to get blood tests/ endoscopy, etc., you'll have to KEEP eating gluten so the results will be accurate.

Thank you all so much for your prompt replies. Its hard to admit, but I started crying immediatly after reading your replies. Thank you all for your information, as much as I want to say, ill stop now, I think i'm going to have to keep going through the pain till I can get a blood test and such to determine a diagnosis.

[kbtoyssni]

Is there information on what I should look for on product labels and such to help me stay away from this? I mean searching through the sites I have seen today, there is alot I can't eat. Do I go Vegitarian?

You certainly don't have to go vegetarian if you aren't already. Plain meat is naturally gluten-free and tends to be easy on a healing stomach. You do want to watch for flavoured or pre-seasoned meat - those usually have gluten. And chicken or turkey with broth added has gluten, too.

If you like sandwich meat, try Hormel brand (the package says gluten-free) or Oscar Meyer (owned by Kraft who will always label if there's gluten in their products). I wouldn't get a meat sliced in a deli because if they've sliced flavoured meat that contains gluten on the same slicer, your meat can get contaminated.

[Lisa]

Susan gave you some great advise.

This forum can be your lifeline. You will find no better experts or advise anywhere.

Read as much as you are able to consume. If it has to do with Celiac Disease or Gluten Intollerence, it's been discussed here.

Welcome!

[Guest ohiodad]

thank you all, but I have another question, .. What kind of doctor should I go to to have this diagnosed? I want to do this asap.

[jerseyangel]

thank you all, but I have another question, .. What kind of doctor should I go to to have this diagnosed? I want to do this asap.

Hi ohiodad, and welcome!

You should see a gastroenterologist. Tell him you want the full Celiac Blood Panel run. (This will not show up on a CBC or Metabolic Panel.

The panel includes:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

[Lisa]

thank you all, but I have another question, .. What kind of doctor should I go to to have this diagnosed? I want to do this asap.

These are some or all of the tests your Primary Doctor may order:

IgC Antigliadin

IgA Antigliadin

tTG Antigliandin

IgC Tissue Translutaminase

IgA Tissue Transglutaminase

Total IgA

[Darn210]

I'm going to consolidate what Patti and Lisa both said. . . your primary care physician can order the tests and is your best bet for getting the ball rolling sooner than later. If your blood test comes back positive, then you'll need a GI because the next step is an endoscopy. If you've had problems for 10 years, you may already have a GI and he may just be able to order a blood panel with a phone call to his office. But if you don't already have a GI, he may want to see you before a blood panel is done and sometimes it can take awhile to get into a specialist. . . thus your regular doctor would be much quicker.

[mommyagain]

Of course, if you don't want to keep eating gluten just for a test, a LOT of us are self-diagnosed. I figured out on my own what I thought the problem was and eliminated gluten from my diet (and personal care items). After about 3 days, the big D went away. Another week or so and most of the painful gas and bloating went away. I've been gluten free for about 5-6 weeks now and feel better now than I EVER have before. I always thought that my problems started with my pregnancy 7 years ago, but now I'm seeing symptoms that I've had longer than that just go away with the gluten-free diet.

I do not need a diagnosis. There are no prescription medications that you need to take to help deal with this disease, so you don't NEED a doctor to decide you're sick and tell you not to eat gluten. A lot of people feel like they are more likely to stay on the diet if they have an official diagnosis. At this point, I can't imagine cheating on purpose, simply because I feel so much better on the diet!

Because I've been gluten free for a little while, I probably would not test positive if I did get tested. But, if I had waited for a test to tell me what I already knew, I would have lost another month (or more) of my life. You've already lost 10 years. So, if you NEED a positive test because you feel like you'll always doubt it otherwise, keep eating gluten. But, in my opinion, a positive response to a gluten-free diet is the best possible indicator.

Many times the blood tests give false negatives (but almost never a false positive). Then, the endoscopy may or may not pick it up, depending on how much damage there is, and if the doc takes enough biopsies... The biopsy is the gold standard for diagnosis, but it's not always accurate (again, false negatives are common). There is also gluten intolerance, which has many of the same symptoms of celiac, but is even less likely to be diagnosed... but a gluten-free diet "cures" that one too...

Good luck, whatever you decide to do!

p.s. I'm sorry if I sound rude or inconsiderate... I'm just sick of us getting jerked around by doctors and their tests...

[LoriC]

Greetings everyone,

I am new here, I didn't even know this existed until yesterday. I am a 36 year old man, have been dealing with constant diarrhea on a daily basis, sometimes 8 to 10 times a day, lower abdominal cramps so bad they double me over at times, gas that smells like sulfur, bright yellow stool, and quivering bowels, low energy lvls, want to sleep constantly, enamel almost gone from teeth, constant sounds from my stomach, always a bad taste in my mouth even right after brushing and mouthwash, always itching but nothing there, a constant always there pain in my belly that I can't get rid of amung other problems.

I apologize for the run on, but I am desperately seeking answers. This has been in my life for at least over 10 years. Am I just gettin old, or is this sound like I may have this problem?

Hi Ohiodad, im from Ohio too I suffered like you but for 16 yrs and had scopes done, only to be told i had IBS..then i developed a rash last year..no dr. could clear it up..so i went to a dermatologist on my own.only to find out i had DH, a rash only caused by celiacs disease. I've been gluten free for a month now, and it's hard, trust me! I have no more D and no more cramping..i was like you could go 4 to 5 times in the morning alone, not to mention after i ate. I am going to see a gastro spec.. just to see what he has to say, then i'll determine if i want to go thru testing..read on this forum, there is sooo much info out there about products to eat, it's going to be hard at first..but you get use to it, it's a lifestyle change for sure. Goodluck and I wish you well. Lori

[jenngolightly]

Be sure your doctor runs ALL the blood tests. My doctor ran only 2 and they both gave a false negative, so I walked around thinking I didn't have celiac - eating gluten and having constant stomach problems. My doc thought it was just acid reflux because the blood tests were negative. Some doctors just don't know how to test for it. Be adamant and demand for all the tests! I had never heard of celiac back then, so I didn't know what tests I needed. Luckily my doctor sent me to a GI because I was getting worse and my GI doctor diagnosed me right away, even with the negative blood tests.

Good luck.

Jenn

[mftnchn]

Welcome to this forum! Please know that we have all been there when it seems overwhelming and there is nothing you can eat.

I affirm your decision to do the testing now even though it might not show up. You'll have a baseline for the future.

Here's my suggestion. While you are getting the testing done (hopefully as soon as possible) and still eating gluten, start reading here (both you and your wife) and formulate a plan for going gluten-free. Start sorting in your kitchen, moving all the gluten items to one place. Check and make a list of the new items you will need to purchase/find. You'll be wise to replace scratched cooking pots like teflon where you can't be sure of cleaning out all amounts of gluten. Cast iron can be problem (it has to be completely stripped down and then reseasoned, most people here have had to replace them). You'll need a new toaster eventually. Start compiling recipes for your favorite foods. Depending on your current habits you may or may not have to make big changes. If you already cook a lot from scratch it will be easier.

Then start your gluten-free diet by eating whole foods. I'd suggest eliminating milk as well as gluten, at least until you are better. Eat meats, vegetables and fruits at first, then add rice if you are doing okay. If you feel good then go ahead with the gluten free replacements--breads, pastrys, etc.

Be prepared that you body may go through adjustments. Hopefully you'll be one that just gets better right away. Some of us have gone through withdrawal, and then other food intolerances pop up. It takes awhile to figure it out. Post here, and lots of people will suggest ideas.

You are definitely no longer alone!!!

[gfpaperdoll]

The important thing is to know that if your blood tests are negative - it does not mean much - but if they are positive - you have a diagnosis of celiac. The biobsy is your choice if you have a positive blood work, you really do not need both to be positive for a dx.

If both of those are negative, or if you do not want to go that route, (maybe you do not want the insurance companies to know...) I suggest you get the Enterolab.com tests & get the gene test. They can test for a gluten problem, soy, egg, dairy & absorption.

& definately give up dairy at the same time - you have to give it up completely - you cannot have a little milk or cheese - this could change once you are healed - but with 10 years of damage it will take you a couple of years to heal. & do not add in soy - soy is very bad for you...

the learning curve is steep, but you can do it, because for one thing you will not believe how much better you are going to feel...

Please let us know what testing you get & the results...

wishing you the best

[Yellow Rose]

Welcome,

You will find that reading the posts will answer your questions what ever they might be. I read every one for the first three months before I figured out how to work the site. I am still reading the old ones. There is a wealth of knowledge here and everyone is so understanding and helpfull. Don't hesitate to ask any question no matter how off the wall it may seem to you.

Yellow Rose

[Guest ohiodad]

All I can say is WOW. I came into this thinking this would be something like maybe a simple thing, but after reading all of your posts, I'm thining I should be scared. I think I am confused at just how bad this is.

The problems that have taken over most everyday, the fatigue, the D, The Pain and everything that comes with it have become almost like mainaining a lemon vehical. I am already feeling a scence of overwhelming with all of the information I have come across in the past two days.

I spoke to my wife about the "Changing pots and pans", should thought that was rediculous and going a little far.

Changing foods is going to be expensive as well. I have been looking at prices of products and could not believe the jump in prices. How do you all manage with having a family that eats together. Do you cook two seperate meals? I am no where close to being a rich man.

What do I do if I can't find a grocery store that sells food that is gluton free? Lori you live in Ohio, where do you shop for food? What kind of resturants do you eat at? What DR did you go to to get your diagnosis? Do you know of any in Columbus?

Does the pain actually stop, does the D go away, do the energy lvl return to what it was when I was 25? What should I do after my diagnosis? MAn, so many questions today? And what do I do about my teeth, that is not something that is going to be fixed by this, The dentist wants to pull them all due to the damage inflicted on them by this. I guess Im worried now. Sorry

[LoriC]

All I can say is WOW. I came into this thinking this would be something like maybe a simple thing, but after reading all of your posts, I'm thining I should be scared. I think I am confused at just how bad this is.

The problems that have taken over most everyday, the fatigue, the D, The Pain and everything that comes with it have become almost like mainaining a lemon vehical. I am already feeling a scence of overwhelming with all of the information I have come across in the past two days.

I spoke to my wife about the "Changing pots and pans", should thought that was rediculous and going a little far.

Changing foods is going to be expensive as well. I have been looking at prices of products and could not believe the jump in prices. How do you all manage with having a family that eats together. Do you cook two seperate meals? I am no where close to being a rich man.

What do I do if I can't find a grocery store that sells food that is gluton free? Lori you live in Ohio, where do you shop for food? What kind of resturants do you eat at? What DR did you go to to get your diagnosis? Do you know of any in Columbus?

Does the pain actually stop, does the D go away, do the energy lvl return to what it was when I was 25? What should I do after my diagnosis? MAn, so many questions today? And what do I do about my teeth, that is not something that is going to be fixed by this, The dentist wants to pull them all due to the damage inflicted on them by this. I guess Im worried now. Sorry

Hi Ohiodad, You are feeling overwhelmed and I know that feeling as i'm new to this too. I found some gluten free products at our local natural health food store, maybe try a GNC near you? We aren't rich either, we're just your moderate average family, I don't even work, my husband does and we're raising 2 children. The meals I try to cook are regular meals, you can still eat a beef roast, with potatoes, carrots, mashed taters, just can't make the gravy with flour, use corn starch to thicken it. I made a pork roast last week with saurkraut and taters and apple sauce. BBQ chicken is good, i use Sweet baby rays sauce. There is a product list of mainstream (regular) grocery items you can buy at regular grocery stores, I don't have that list handy, but I know its on this site somewhere. I haven't changed any pots and pans yet, I'm not sure how sensitive I am to gluten yet. Just by following the diet the best I can and taking the med for my rash the DR. gave me has helped greatly with the D and cramping. I'm not sure you'll ever feel 25 again LOL with celiacs or without But I do know my energy level has gone up and i'm feeling somewhat normal again.

My family dr. set me up with a gastro spec. I see him mid Oct. See if your family Dr. will refer you to one. Columbus is a much larger area then where i live, I'm sure you have much more to pick from than I do. The only products I buy from the Health food store, are my bread and goodies that i might crave. So far the bread i bought isn't great tasting, so I only eat a couple slices a week, so that lasted me a few weeks, you have to keep it frozen and toast it when you use it. to me that helped with the taste. You can still have lunch meats, I forget what brands you can buy at the store packaged..not sure if its Kahns or Oscar Myer..someone on here with more knowledge can help you with that I'm sure.

It is very overwhelming, I cried for 2 days when I got the list of no no's from my dr. some of those things i never heard of..Just try to do your best. Last night i made tacos for dinner, I used McCormicks taco seasoning which is gluten-free..I bought 100% corn tortilla shells, made by Ortega, with lettuce, tomato, cheese. So you don't have to starve, Just do some research on mainstream foods and look real good on this site, it does have tons of info on foods.

Changing your diet is not something we can do in a week or a month, but you can try and even only being gluten-free for a month now, it's getting easier..As for eating out, we don't do that to much anymore..and if we do, I usually go with a salad, grilled chicken with NO croutons. But i'm a salad person and always have been, so that doesn't bother me. there is a section on this site that tells you about resturants that serve gluten-free menu items or how to order from the menu. Until I know for sure how sensitive i am, I just stick with the items i'm pretty sure i'll be safe with for now. I wish you luck and just relax and do research on here. Goodluck, Lori

[Darn210]

I spoke to my wife about the "Changing pots and pans", should thought that was rediculous and going a little far.

Changing foods is going to be expensive as well. I have been looking at prices of products and could not believe the jump in prices. How do you all manage with having a family that eats together. Do you cook two seperate meals? I am no where close to being a rich man.

What do I do if I can't find a grocery store that sells food that is gluton free? Lori you live in Ohio, where do you shop for food? What kind of resturants do you eat at?

Ohiodad - you're in information overload right now - it gets better, I promise.

Changing pots and pans may not be necessary . . . it's the scratched up nonstick/teflon coated pans that mftnchn was talking about. The whole family does not have to go gluten free. You just need to be aware and take precautions against crosscontamination. You should have your own butter dish, your own mayo jar . . . anything that you dip a knife into. Wash hands after handling gluten items and before handling gluten-free items. Keep the table and countertops clear of crumbs . . . stuff like that. Instead of having your own toaster, you can use toaster bags so you can keep your bread from touching the thousands of breadcrumbs that are residing in your toaster as we speak.

I do most of my buying at a regular grocery store. My trips to the specialty stores are usually for the specialty flours as I do a fair amount of baking. My Krogers carries some basic gluten free mixes and products that may be most of what you need (they are located in the health food section). I will also say that the Kroger prices on the specialty items are cheaper than the same item at the specialty store I go to. With the obvious exception of bread/cracker/cookie items, most of the items in your home have mainstream alternatives that are gluten free. You just have to do the research (check this website first - somebody has probably already done it) and switch to the brand that is gluten-free. For example, Betty Crocker's Au Gratin potatoes have gluten but the Great Value brand (Wal-Mart) is gluten free.

Initially, I did not take my household gluten free. Most meals were either already gluten free or only took a small modification to make them that way. I rarely made two totally different meals. I would say the biggest change was that I no longer baked gluten items. I did not use wheat flour (this includes the boxed cake mixes) - it puffs up and floats about and who knows where it lands.

Check the restaurant section of this forum. There are many restaurants that have gluten-free menus - Chili's, Cheeseburger in Paradise, Outback Steakhouse to name a few. Wendy's and McD have info on their websites as to what to order that is gluten-free. You never knew because you didn't need to.

I will say that my first week or two, I was kind of in a panic mode . . . but it quickly settles down to a routine .

[mouse]

Hi ohiodad. I am 65 years old and was diagnosed 3 1/2 years ago. I can understand how you and your wife feel about overload. But, since I was about two weeks away from no recovery (my doctor's words), my husband and I welcomed the diagnosis. My first months of meals were a disaster, but we ate them anyway. Then I stopped panicing and found I could cook as usual, but with a few minor ingred. changes. I cleaned out my pantry and frig of all gluten containing items and the ones my husband uses for his sandwiches or snacks, have an X on them. He has is own condiments and his bread is kept in the freezer. I bake gluten free, but mostly not from scratch as I just don't have the energy for that. I cook gluten free for my dinner guests and mostly they love everything I make and cannot tell the difference. My gluten free brownies go to every outdoor barbecue that we get invited to and they are the first thing scarffed up. Even the little kids know they are gluten-free and they love them. They never last for the desert part of the meal.

This is certainly all doable. We also go out to dinner with friends. The only difference is that I give them a choice of restaurants that I know have a gluten-free menu.

The only thing is that, in case someone has not mentioned it, you should have your own toaster. When I read that a few months after going gluten-free, I thought that was overkill. It is not and it needs to be done. My husband now uses the expensive 4 slice toaster and I use a $15 one from Walmart. He also only uses one section of the counter for his sandwich making and I know to clean that area real well and carefully.

I wish you well and just stay positive. You are young and good health is around the corner for you. That is the most important thing to remember.

[gfpaperdoll]

Ohiodad, I am 60 & I have more energy & feel better than I did when I was 25 (I was sick all the time then...)

just take it one step at a time. first decide what you are going to do about testing. Then when that is done start your diet - of eating just whole foods - no need to purchase those gluten free noodles for at least a couple of months. Just get yourself some White Corn tortillas - heat them up a little in a skillet & wrap them around anything - PB & Jelly & bacon, sliced chicken & salsa & advocado, sliced beef with chopped onions & cilantro - any combination of what ever you have or want is good!!!!

This will be an adjustment for the wife, the non celiac spouse will go thru some adjustment also, as she will have to learn about cross contamination issues and how serious it can be. What happens is that once you are off gluten, & then you get a teeny little crumb it will make you very sick. Or at least it does most people. & we all think that WE are not going to be that sensitive... It took me two years to finally get rid of my cast iron skillet... & I knew better but I kept thinking no, I hardly ever cooked with wheat for years... It is the porous surfaces that gluten gets into & cannot get washed out, like wooden cutting boards...

It is a shock to your system to think that what you and everyone else have had drummed into their heads for the whole of our civilization, that wheat ( & rye, barley & oats) is good for you, is just not true. In fact it can kill you. & neither do we need dairy to make strong bones, that was a huge promotion when TV was invented. We do not need dairy, it also can damage the villi, just like gluten. So it is a shock to the mind to find out something that we did not question, is in fact bad for us. can you imagine how people felt when someone figured out that you could have something unseen on your hands that could kill a person that you were operating on or a mother that you were delivering her baby, and all you had to do was wash your hands with soap & water to get them clean. You know if you think about it the concept of germs had to be pretty preposterous...

[Guest ohiodad]

I just made an appointment for Thursday November 15th, of course they want a sit down first before they will test since I do not have a family doctor for referral. The good thing is, this doctor is the same doctor that diagnosed one of my wifes co-workers with it 10 years ago, so cross my fingers he knows what he is doing. I am sure he is going to want to know symptoms and such and then he will decide if I need tersted or not.

I have to be honest, I hope this is not it, I hope its something simple. It would be easier. If it is though, let us hope the transition will not be a painful one.