gluten-free Six Years, Specialist Says Poison Myself For A Month?

[CaptainToilet]

Hello there, 

 

I've been an undiagnosed Celiac since I was 15 years old. 

My mother, bless her heart, noticed that I'd always been a really skinny kid and with puberty I was really not gaining weight and was oftentimes both sick and w/ diarheea.

 

Fast forward six years and I'm 21 years old, 6'4'' and about 170-190 pounds depending on if I'm eating a bunch and exercising a lot. 

 

I'm quite physically active and with the years i"ve learned to cut more and more gluten out of my diet, and yet even with all these great advancements I still sometimes find myself making 4 to 6 bowel movements in a day.

 

It's embarassing and I don't talk to people about it and I just move on and try to forget about it, but I decided that I need to stop living in denial before I get complications due to this unhealthy behaviour. I don't want to get colon cancer or something and have to use a colostomy bag or something. 

 

The worst part about all of this is the most recent news delivered by a gastro specialist whom I met with yesterday. He told me in no uncertain terms that I need to basically start eating like 4 pieces of bread a day which is just absolutely ridiculous given the fact that it's going to poison me. I'm going to lose tons of weight, muscle, I'm going to feel disgusting, I'm going to have horribly painful intestines and I just don't feel comfortable doing this.. not to mention the ridiculous alienlike probe procedure wherein I apparently must sign off a waiver saying I acknlowedge the risk of not only having a camera shoved down my throat and into my stomach but I must also be okay with medical students being in attendance as well.

 

SO apart from feeling like a total guinea pig I also feel like I'm being instructed to do something that my body seriously does not want me to do. I feel confused and scared for my health and extremely frustrated and filled with anxiety over all of this bulls$#&. I am a university student and I have finals soon and I can't afford to be a mind-fog diarrhea zombie for a month and a half.

 

Not to mention I work hard labour in the summers in desolate locations in order to pay for school -- so all of this will ahve to happen in September or something. 

 

I understand and acknowledge a lot of you poor Celiacs out there have a LOT worse than me and all of this must sound so trite and conceited where other people have seriously worse-off condititions from me, I've just always kept sort of a blind eye to this celiac thing and I know that eventually I'll have to come to terms with it and I'd rather do that at age 21 before I get something worse from all oft his UNHEALTHY intestinal distress which persists even when I have a strict diet.. 

 

I could really use some advice from people who have been through this stuff. I don't understnad why I need to eat gluten for a month before an endoscopy when I've already got such bad bowels to begin with. 

 

 

Sincerely, 

 

Captain Toilet, written in durress on the toilet, because he's always on the F*@*@N toilet waiting to expel gas so he can fall asleep.

Its extremely annoying and I'm done living a life of this bull$h|t

 

 

[GottaSki]

Welcome Cap!

 

Gluten challenges are never easy, but your doctor does have the details a bit off.

 

One slice of glutenous bread per day is sufficient during the challenge.

 

Two weeks is needed prior to endoscopic biopsy.

 

Twelve weeks is needed for celiac antibody tests.

 

Hope this helps....if there are still small amounts of gluten in your diet, the DGP blood tests may reflect this.

 

And even though they are not accurate without gluten consumption - annual celiac antibody panels are recommended for those with Celiac Disease ... sounds like you are overdo for a complete antibody panel.

 

Good luck to you : )

[moosemalibu]

I understand what it's like to work while going to school. I had 2 jobs while I did my bachelors degree. Is it possible to wait to do the gluten challenge after spring quarter and do it in the summer where it will only affect your job and not your study? 

 

An endoscopy is great for biopsying the small intenstine. It is the gold standard to check for microvili atrophy and infiltration of eosinophils. It also will check your esophagus and stomach as well. It's not a bad idea since you have been undiagnosed this whole time and still having symptoms.

 

Are you currently eating gluten or just debating it? I can't tell based on your post. Gottaski/Lisa is right.. 1 slice of glutinous bread is sufficient. A great resource to read is the cureceliacdisease.org. It has a great FAQ section.

 

Good luck and I've been there before myself... gluten challenge after being gluten free is a nightmare. But ultimately it's your choice to do it or not. If you want to stay gluten free without an official diagnosis you are not alone. Many here are that way.

[nvsmom]

I think if you are eating small amounts of gluten, you might as well get tested (serum and biopsy). It sounds like you are not completely gluten-free at this time. If you have gluten in your diet, it will set off the overreaction my your immune system that causes pain, bloating, headaches, and the need for multiple bathroom visits (love the name BTW). If you get the biopsy done after eating more gluten for a couple of weeks, be sure to do the blood tests. You might want to do the blood tests anyways, if you are eating small amount of gluten regularly, it could be enough for an accurate test.

 

These are the tests:

tTG IgA and IgG  

DGP IgA and IgG  (good for monitoring gluten-free status - great test)

total serum IgA  (a control test)

EMA IgA  (usually only positive in advanced cases when gluten is regularly consumed)

AGA IgA and IgG (older and less reliable test)

 

All that being said, if you are eating 100% gluten-free, and are happy to stay that way, there is no great need to be tested. If it's positive you will just be back on the gluten-free diet anyways.  Good luck in whatever you decide to do.

[CaptainToilet]

I'm pretty well 100 per cent gluten free. I do not eat anything with wheat, barley, rye, oats in it. So if I'm not gluten free it's due to mislabeled containers or people serving food who don't know jack $hit what they're selling.

 

Even then, though, yea I often go through periods of sickness just eating the simplest of foods. I'm assuming its possile I've also become lactose intolerant as well.

 

Tonight I shall go to a bar which is entirely gluten free and socialize with some of the people there

[bartfull]

Hi and welcome! You say you have learned to cut more and more gluten out of your diet. That sounds to me like you are still getting SOME gluten. And that is why you're still in the bathroom so much. At 21 you must be almost done with college?

 

Although I wish I could have afforded to be tested so I would know the extent of the damage, I was uninsured and just decided, based on family history (Mom was a diagnosed celiac) and my response to the diet, that I too must be celiac. I went COMPLETELY gluten-free, and you need to too.

 

If you'd rather not put yourself through a gluten challenge, just make sure you are completely gluten-free. Watch out for cross-contamination. (Go to the coping section here and read the Newbie 101 thread.) And you might also consider giving up dairy for a while. If you still have villi damage, dairy can make you sick. After you have healed chances are you can get it back.

[CaptainToilet]

No I am completely gluten free.

I just acknowledge that there's potential for food to simply have gluten in it even though the labels state otherwise. I do not eat food that say it may contain wheat. I even have stopped eating soybean oil. I also avoid dairy as well. 

[Cara in Boston]

If you are still getting symptoms than it would follow that you are still getting gluten (from somewhere).  I would bet it is cross-contamination since I imagine a college student is eating a lot of meals outside of your home.  If you are still getting gluten (assumed) then you should be able to have the blood tests now.

 

My doctor told me 6 months with 1-2 slices of bread a day.  I only made it 2 months and decided I didn't really need the "official" diagnosis . . . my son was diagnosed and it was clear to me that I had issues with gluten as well.  No need to continue to make myself sick so that a doctor could run some tests to tell me what I already know.

 

As an adult, why do you feel the need to have a doctor's diagnosis if you already know gluten makes you ill.  If the results come back negative for celiac (which they might, even if you have it) will you resume eating gluten again?  If you don't plan on being in the military or going to prison (hopefully that is not on your agenda) then you are 100% in charge of your own diet and you don't need a doctor to tell you to stop eating gluten.

 

How will your life change with an official diagnosis?  Is it worth making yourself sick to prove that you are sick?

[bartfull]

There are so many ways to get cross-contaminated! If someone dips a knife in your butter or mayo after it has touched gluten bread, the whole stick/container is now contaminated. Or if you toast your gluten-free bread in a toaster that gluten eaters use, your gluten-free bread is now gluten toast. If you use a strainer that has ever strained gluten, or if you use scratched plastic containers or teflon pans that once held gluten, or wooden spoons or cast iron, you have just glutened yourself.

 

Of course you may be showing signs of further intolerances. I react to soy too, and my very worst reactions (worse even than gluten) come when I ingest corn.

 

Maybe you should do an elimination diet. Start with just a few basic whole foods, then when it seems you're feeling better, add back one food at a time.

[CaptainToilet]

Very true. Im trying to get help for my issues which is why I want a doctor's diagnosis to rule out that I don't have crohn's disease or colitus or IBS or any of the other inumerable amount of other things which I could potentially have.

 

As for the whole toaster thing; 

 

I guess I am definitely not completely gluten free then. As a student I do a whole lot of cooking, and I avoid eating anywhere but home. If I go out to eat, I go places where I feel confident the food doesn't contain gluten.

 

I really do make an effort to stay as far away from it as possible but I share a toaster oven with a roomate who puts bread in it. Same goes for when I visit family, etc. 

 

 

..something about stick to whole foods

 

HOw do I go about eliminating things where a lot of the stuff I eat may actually potentially be causing the mass amount of gas and discomfort I experience? What food out there are known to be food that no one on the planet has a sensitivity to?

 

I eat a lot of corn, meat, potatos, beans and other vegetables.  The meat I eat I make SURE has nothing in it except for meat. I hunt wth my father and eat a lot of venison and meat that is legitimately free of unnecessary additives. It's just such a huge task to figure out where my issues are when I already restrict my diet so much.

 

 

Also I'd like to add I am very respectful of all the advice I'm geting, I"m just finding it basically impossible to see myself tackle this issue and figure out why I get so much discomfort SO easily. If I eat something that's 'off' anywhere around dinner, rest assured by light-sleeping self will not sleep for several hours after I originally intended to sleep--- just so I can pass unnecessary gas.

[bartfull]

Start with meats, potatoes, veggies and fruit, preferably fresh. When I went on an elimination diet I ate meat, sweet potatoes or white potatoes, broccoli or cauliflower, and the only "condiment" I used was butter. Yeah, it was boring, but it helped me to figure out what was causing my problems.

[nvsmom]

For the toaster issue, you could buy some toaster bags as Open Original Shared Link, or just use tinfoild to protect your food. There's always the option of buying your own toaster but I know space and funds can be tight when you are a student.

 

You do need to buy your own condiments if there is a chance they are being contaminated; butter, peanut butter, jam, mayo, mustard and such should be replaced. Recheck sauces like soy, worchestershire and barbque sauce for gluten too. When I travel I bring my own gluten-free bread, butter, peanut butter, etc. I look like a bit of a dolt doing it but I haven't been glutened in over a year. It's a hassle but I feel well.

 

There's no rush on that if you decide to test though as a little extra gluten can only help with test accuracy.

 

I too felt my worst at the end of the day when the build-up of symptoms was at it's worst. I used to make sure I always had a sweater or jacket with me so I could hide my pregnant belly bloat after dinner.  I remember many nights where I hung my body off my bed with my butt in the air to try and get things "moving".... gas rises, right?  LOL

 

If you are going to go gluten-free without testing, you might want to limit your eating out. Even if a retsaurant claims it's food is gluten-free, if they serve gluten filled food there is a chance of contamination. I remember early on in my recovery when I ate at a place with a small gluten-free menu. I had fish, potatoes and roasted veggies - it glutened me and it was supposedly gluten-free. I'm guessing it was from the grill.... I still don't know. Anyway, it might be better to eat ahead of time and meet people for coffee or drinks (not beer ) later on... maybe nachos? Just for safety. KWIM?

 

Lactose intolerance is common in about half of all celiacs at diagnosis. After 6 or more months many of those regain the ability to consume lactose once the villi which make lactase have healed. Not everyone gets it back though. I had lactose problems. It hurt and made me bloat but since I used to always be bloated and hurt, I just brushed it off. I went milk free when I went gluten-free free, and it really did help. After about a year I found I could eat cheeses and some icecream...I got used to going without the rest. Try going dairy free and see if it helps.

 

You could have other food issues. Keeping a food and symptom journal can be really helpful with tracking what foods are an issue for you. Write down everything, even the the things you would think are harmless.  I get a lot of pain from apples and pears that are raw - that took me a long time to figure out as they seem like innocent foods. Some people are bothered by sugar alcohols like in gum. Write  it all down.

 

Best wishes.

[GottaSki]

Sounds like you are doing well with eating mostly whole foods.  Some things I can suggest would be:

 

Digestive Enzymes before each meal.

 

Daily Probiotics

 

and do learn where cross-contamination is allowing small amounts of gluten into your diet.

 

If these do not work...an elimination diet with food/symptom log is the best way to figure out other possible intolerances.