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More Frustrated Than Ever Before

jasonD2

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jasonD2 Experienced
jasonD2
Posted

Forgive me for my rant

I walk around every single day not knowing if I have Celiac or Gluten Intolerance and to be honest its driving me crazy. My stool antigliadin was slightly elevated when I was tested a year and a half ago and my blood work was negative for celiac back in 2001. I do carry 1 of the celiac genes and all the women on the maternal side have had stomach issues. My mother has IBS and diverticulosis, but was never tested for celiac and I dont think she has it cause she can tolerate wheat pretty well and also refuses to get tested...her and I have been getting into arguments cause i keep pushing her to get tested.

I initially responded well to a gluten free diet, and even did ok with a gluten-light diet for about 8 months. I do have multiple food sensitivities so when I experience problems i dont know if its trace amounts of gluten that i consume or other foods that are causing the problems...when i say problems I am referring to constipation...my only real digestive symptom

At this point I refuse to go back on gluten for 2 months to get retested and also absolutely do not want a Celiac diagnosis. Most of you would argue that its better to know, blah, blah, blah...but i don't care ...some of you may have stronger personalities but I don't and getting that type of diagnosis would destroy whats left of my life, and believe me there's not much. As it stands i'm already a recluse and eating out in restaurants is more stressful than anything you can imagine...if it were to go to the next level i dont know what I would do.

Anyway, go ahead and chastise me as much as you want cause I asked for it :)

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Gfresh404 Enthusiast
Gfresh404
Posted

haha I am the same way. But sometimes, I think an answer would just be better, just to know for certain. Sometimes not knowing can be worse, but then again, you never know how you will feel once you truly know the answer. I had neg. biopsy and neg. tTG. 6 weeks later of gluten-free diet I had a neg. full Celiac blood panel and tested neg. for the two genes supposedly said to be related to Celiac. Sometimes I think I would just rather know.

Forgive me for my rant

I walk around every single day not knowing if I have Celiac or Gluten Intolerance and to be honest its driving me crazy. My stool antigliadin was slightly elevated when I was tested a year and a half ago and my blood work was negative for celiac back in 2001. I do carry 1 of the celiac genes and all the women on the maternal side have had stomach issues. My mother has IBS and diverticulosis, but was never tested for celiac and I dont think she has it cause she can tolerate wheat pretty well and also refuses to get tested...her and I have been getting into arguments cause i keep pushing her to get tested.

I initially responded well to a gluten free diet, and even did ok with a gluten-light diet for about 8 months. I do have multiple food sensitivities so when I experience problems i dont know if its trace amounts of gluten that i consume or other foods that are causing the problems...when i say problems I am referring to constipation...my only real digestive symptom

At this point I refuse to go back on gluten for 2 months to get retested and also absolutely do not want a Celiac diagnosis. Most of you would argue that its better to know, blah, blah, blah...but i don't care ...some of you may have stronger personalities but I don't and getting that type of diagnosis would destroy whats left of my life, and believe me there's not much. As it stands i'm already a recluse and eating out in restaurants is more stressful than anything you can imagine...if it were to go to the next level i dont know what I would do.

Anyway, go ahead and chastise me as much as you want cause I asked for it :)

melmak5 Contributor
melmak5
Posted

Choosing to have a gluten free lifestyle is hard.

Being physically ill and uncomfortable is really hard.

Feeling like the only way to get better is by giving up more of your life is really really hard.

That said, if you are "gluten-light" going all the way to gluten free might not be as hard as you think. If you have informed yourself about products and hidden gluten, then you are more than half way there.

Is it easy, no.

Are there days when I say "oh f-this, I just want _____" (whatever is easy, convenient, in front of me or what I am craving) But after 1.5 years of not eating gluten I can tell you that for me, it was worth it.

A lot of the feelings of loss, isolation and depression started to lessen as my body started to feel better. (at least for me)

The cheerleader types of people pissed me off. I got really angry when people said "congrats, you have celiac diease, you finally know whats wrong with you and its just not eating gluten." I wanted to punch these people in the face.

Thankfully, for them and I, I didn't.

So sure, some people may say: why are you continually abusing your body? or cite research linking untreated celiac disease with other diseases and disorders... but it sounds like you have knowledge about that already.

All you have to do is say, I want to be gluten free today, and deal with today.

Yes it will be hard, and yes, not all of your friends and loved ones will understand - at first (some never) but this place is a pretty awesome resource for support. You can:

-ask for products/recipes of your favorite foods or foods you are craving

-ask for advice about going out to eat

-ask for advice about going shopping

-ask for travel advice

-ask for advice about how to talk to friends and doctors

-or just ask for some acknowledgment that this is hard

That said, if you feel that you need the diagnosis, go for the gluten challenge and the medical tests. Know, that tests can provide false negatives and that if you do not have a gluten intolerance - celiac disease or a gluten allergy, and instead are sensitive to gluten... well you might never get the piece of paper you are looking for.

If you have other sensitivities, it is hard - Trader Joe's Gluten Free Ginger Snaps are AMAZING... but the soy flour in them really does a number on me, so I had to let them go. It really really stunk because I was so excited for a tasty gluten free product and to still not be able to have it... ARHHHHHHHHHHH!

But at the end of the day, you have to decide what you want to put in your body and what you do not.

I hope you start feeling better soon.

Green Eyes Rookie
Green Eyes
Posted

Hey Jason,

I think it is totally your right to choose what level you can live with. Does it really matter if you are gluten intolerant or celiac? If you can tell not having gluten works for you, don't worry about the rest. I'm sure dealing with other sensitivities makes the process even more difficult. I can only encourage you to continue the fight for your health!!!

I can relate to you with the lack of GI symptoms. I have the constipation as well.

As for your Mother!!! I know you want what is best for her, but she gets to make those decisions. Tell her you love her and would like to see her get tested, but leave the rest to her. Be there for her!!! I have family members that will not listen to me and all I can do is educate them on the facts. The rest is up to them!!!

Roda Rising Star
Roda
Posted

I had already suspected the possibility of celiac 4 months before I asked to be tested. I still was suprised when the doctor told me that the blood work was positive and I needed to see a GI doctor. I was in shock. Then I thought to myself "dummy if you did not think it was a possibility why did you ask for the test?" Anyway it still was a shock. I had done a lot of reading prior to testing and after my biopsy came back with the diagnosis I felt I was OK. I was wrong. I got really mad and irritated because it came right before Halloween and it would put a damper raiding the kid's halloween candy. :P At that time I did not know twizzlers had wheat in them and was munching on them. Oh well. I'm glad I know, but I don't celebrate it by any means. I feel so much better so I know I won't cheat or go back to eating anything with gluten on purpose. I can understand your struggle. I am struggling with the decision of putting my oldest on a gluten free diet for a trial period to see what happens. He had a neg IgA tTG (it was 2), and no other tests. His allergist/immunologist said that the antigliadin antibodies are not as accurate and don't always paint the picture. My oldest son is 8 and is only 47" and 47#, has allergies to quite a few seasonal weeds, cockaroaches/dustmites, had contipation issues since birth, used to complain of non specific belly pain (nothing was ever found wrong), and has mood swings. The mood swings and weird behavior have gotten worse in the last 1 1/2 months. I want to try it , but on the other hand don't want to impose it if he really does not need it. At least the NP at the peds office is supportive and said she would write a letter for school. I am the type however if someone askes I will help educate and explain things though and I don't feel sorry for myself like I did at first. Things will get better!

I have a brother whom I really feel is celiac also. He was diagnosed with sarcoidosis and erythema nodosum in 1992, has exceptionally low cholesterol despite being 5'10" and 350lbs, alot of gas and bloating, and keeps weird rashes on his body. His oldest son was diagnosed with addhd in elementary school and is now 16 and has struggled with behavior issues. He refuses to get tested and literally does not want to know and does not care. My mom got screened and was told she was ok. My dad has not gotten tested yet and I don't know if he will. He has had chronic heartburn since I can remember, drinking brioski like water. He has taken protonix for at least 5+ years and he also has very low cholesterol despite being overweight. At first I thought maybe my mom would have been the "at risk" one, but I am leaning toward dad. My main gi symptom was the horrible heartburn. I don't think dad wants to know either. All you can do is give them the facts and hope for the best. I don't preach and don't mention it any more. At least my mom is supportive and thinking ahead for when we will be home for a week.

fripp017 Apprentice
fripp017
Posted
I walk around every single day not knowing if I have Celiac or Gluten Intolerance and to be honest its driving me crazy.

I do have multiple food sensitivities so when I experience problems i dont know if its trace amounts of gluten that i consume or other foods that are causing the problems...when i say problems I am referring to constipation...my only real digestive symptom

At this point I refuse to go back on gluten for 2 months to get retested and also absolutely do not want a Celiac diagnosis.

For the first part I quoted - I am the same way. I actually saw my GI on Feb. 25th and he said "You probably have Celiac." What the hell is "probably"? I argued with him and he even used the expression "ape poop" when I asked him why he couldn't diagnose me. My blood test antibodies were elevated, my biopsies came back showing damage, and my h. pylori test came back neg. This pretty much proves that gluten is my enemy. But, I was told that some people can have chicken or rice sensitivities that causes the damage to the small intestine. That may be why you are producing antibodies and not feeling well. Do you eat chicken and/or rice often? I have also read that being on the gluten-free diet can cause constipation by itself because of the lack of foods with fiber.

And, for the last quote . . . I feel the same way about testing and dealing with idiot doctors. I am so tired of them guessing. It's your choice to fight. I have two children that I want to be checked out, so I am fighting for the diagnosis only so they won't have to suffer like I have. There are lots of great people on this site and they can be a great help when going through all of this. If you don't want to be diagnosed then eat what makes you feel good. When the doctors couldn't figure out what was wrong in the begining, there were days when I woke up and I thought I am gong to eat anything I can find to make me feel okay. The next, after suffering, I kept thinking how I would rather starve than have to feel the pain anymore. If you can find what makes you feel fine, you don't need a diagnosis. Doctors, in my opinion, aren't that reliable anyways.

Good luck!! I hope you feel better!

Gfresh404 Enthusiast
Gfresh404
Posted
Forgive me for my rant

I walk around every single day not knowing if I have Celiac or Gluten Intolerance and to be honest its driving me crazy.

I'm the same way. but if you think about it, it really does not matter one way or the other. I think, I know at least for me, that I am just channeling my frustration away from the real problem that I have to deal with: getting better. If I had a confirmation that it was Celiac, sure it might makes things a little bit simpler, but not necessarily better. These things just take time, and I know it is difficult, but we must be positive and keep reminding ourselves that things WILL get better.

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