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Ok, I'm Going To Have To Face It.


JerryK

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JerryK Community Regular

I think my main problem is that I just don't want to admit that I have a problem. I can't seem to face

the fact that gluten is making me sick, but the evidence it is staring me in the face. I'm having a terrible time coming to terms with it.

I'm a runner. It's not uncommon for me to take a 10 mile run. Lately my body has decided that 5 miles into my run is a great time to announce that what I've eaten didn't agree with me. Now, I don't know how many runners we have out there, but there are no restrooms conveniently staged every couple miles....and when you’ve gotta go, you’ve gotta go.....

The problem is, as soon as the symptoms dissipate, I go right back to my sloppy eating habits and pretty soon I’m sick again. How do you come to terms with this?

Would going and getting an official diagnoses sort of make it more “real” to me, or should I just forever more avoid gluten? Any advice?

Anyone else know what I mean about having difficulty coming to terms with it?

This must be what it's like to be a smoker. You know cigarettes are bad for you, but you can't stop....


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Jestgar Rising Star

Everyone is different. You might need an official diagnosis just for reinforcement. Start pursuing it, you have nothing to lose.

Nancym Enthusiast

Try scaring yourself straight, read "Dangerous Grains".

I think you know what needs to happen here. Time to accept it and act on it.

Oh yes, wanted to add that staying involved in the message forum might help you with the will-power.

CarlaB Enthusiast

Sounds like you might need an official diagnosis just for your own motivation. I'm sure you have a problem with gluten .... it's just very clear from your posts here!! I went through denial, too. Enterolab can do the testing and you can be gluten-free for it. Dietary response is clinical proof, however.

Guhlia Rising Star

If you feel as though you will need the positive diagnosis, you may want to consider going the routes of Enterolab instead of the unreliable doctor's blood tests. The results from Enterolab will not only come back positive if you have Celiac, but they will also come back positive if you are gluten intolerant. This may aid you in making your decision.

RiceGuy Collaborator
I think you know what needs to happen here. Time to accept it and act on it.

Oh yes, wanted to add that staying involved in the message forum might help you with the will-power.

Yep. Though I didn't have too much difficulty in the willpower department, I still didn't relish the idea of giving up favorites like pasta. Now for the great part; you won't actually give up anything worth having! I found the Tinkyada rice pastas are truly better than wheat pasta. I'm not kidding either. They don't go from perfect to mushy nearly as quickly as wheat pastas do. I honestly can't tell it's not wheat either. I was using some rather high quality durham semolina stuff too. For breads, there's a ton of gluten-free bread recipes on this site and all over the Internet. Prepackaged ones are also available.

And I agree that this forum can be a real courage booster. Just reading the various posts will reinforce your resolve. It will show you that your situation is not only shared by others, but many are likely worse off than you. So this is the time to act - before you do more damage to your insides. I'll bet you purchase good quality footware. Why? Because you know you'll suffer if you don't. But you enjoy the good that comes from making that wise choice when selecting your running shoes.

I personally can tell you that I have found so much more variety in foods since going gluten-free that I was missing out on, because of my "tunnel vision" on diet. Most of the world depends on rice as a staple, not wheat. I recently posted a list of about 25 gluten-free flours. How many of them do you think the average American ever even heard of?

jerseyangel Proficient

Jerry,

It's time. Call your doctor tomorrow morning and make an appointment to be tested. Please :)


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JerryK Community Regular
Jerry,

It's time. Call your doctor tomorrow morning and make an appointment to be tested. Please :)

OK :blink: I will work up the nerve to call my doctor. Ignoring it doesn't seem to be doing anything :unsure: He says, while listening to his intestines rumble......

tracey* Rookie

Would it help if you wrote it all down?

I've kept a blog for years, and if you go back through the archives there is NO DOUBT there is something wrong with me and it's food related. It's helped me look back and go 'wow I really am sick and I NEED to do something about this or it'll be another 5 years of "gees i feel like crap" '

Even if it's something you casually do when you have symptoms, it might help to see how many times a week, a month, a year you're flaring up.

Open Original Shared Link Open Original Shared Link are free

you don't have to advertise it, i keep my health blogs to myself

I hope you get the turning point you need :)

Fiddle-Faddle Community Regular

You want to be "scared straight?" Look up a few members of this board: Ursula, Canadian Karen, Armetta, JudyinPhilly, Nini.

There are many others like these who kept eating gluten because the doctors they saw were too stupid to make the connection between their symptoms and gluten.

When you continue to ingest something that is toxic to your body, the immune system turns on YOUR BODY, and you develop autoimmune disorders, one after another, each one potentially more devastating. Celiac isn't a wheat alllergy, it's an autoimmune reaction triggered by gluten, eventually destroying the villi lining the intestines. If caught early on, the villi heal; if not--they don't.

Check out people's signatures on this board. Notice how many of us have autoimmune thyroid disease. Notice how many of us either have children with autism spectrum disorder, or are on the spectrum ourselves (Asperger's Syndrom is a mild form of autism). Notice how many people have or have had fibromyalgia, IBS, rheumatoid arthritis. There's a whole subset of celiacs who are eventually diagnosed with Lyme disease (which is a connection worth checking out).

If you already know your problem is gluten, but you need a doctor to confirm it, I don't know how that's going to do you much good in the long run. Look how many smokers alcoholics, and drug users are told by their doctors to quit, how many coffee drinkers are told to cut down on the caffeine, --and don't.

It ultimately comes down to you. It's YOUR decision what you put into your mouth, doctor or no doctor, diagnosis or no diagnosis.

I'm sorry if that seems harsh, but that's reality. The GOOD news (yes! there is good news!) is that everything you crave can be made gluten-free: breads, cakes, cookies, pastas, pizzas, casseroles, even gluten-free beer is available. The pre-made breads and cookies, like their gluteny counterparts, taste much better if you make them fresh yourself, but they are certainly edible. And this board is the most wonderful place on earth to come to for support, ideas, prayers, recipes, restaurant ratings, a shoulder to cry on if you've had a lousy day--and a cyber kick in the pants if that's what you really need (and it's ignorable if you don't really need it!).

I wish you the best of luck, and hope that you will keep us posted on how you're coping. :)

Ursa Major Collaborator

Hooray, you've finally decided to take your head out of the sand! Now go ahead and shake it out of your ears etc., too, and get yourself going in the right direction!

I agree with Fiddle-Faddle, you know perfectly well what you need to do. So, just make the decision and do it! And DON'T look back, just forge ahead. You'll be fine. And might actually manage to finish your run for a change, without getting the 'runs'. :blink:

kbtoyssni Contributor

If it's a denial thing, you might want to talk to a therapist. It is a major life change and that might help you deal with it.

You might also want to think about the effect this has on your family, friends and coworkers. Is it fair to your family when you're sick all the time and running to the bathroom? Sometimes it's easier to do it for someone else. It reminds me of all those stories of people who were overweight for years and finally lost it when they had kids because they wanted to live to see them grow up. For years they couldn't/didn't lose weight because it only affected themselves; as soon as it affected other people they lost the weight.

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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