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What If I Dont Get The Diagnosis?...

HelpinOhio

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HelpinOhio Explorer
HelpinOhio
Posted

If you want to know my whole story look at the my other threads and the one in "coping with" discussion about losing my childhood.

Anyways, I came to the conclusion that I do have Celiac Disease. My mom has Celiac Disease and I have many symptoms of it, Ive been researching what is wrong with me for 1 1/2 years now. I got the blood test twice about a year ago, and both times I had been almost all gluten free for a few months prior. They came back negative.

I have been eating gluten normally for about 8 months now, and added a +2-4 pieces of bread a day for the past 5 weeks. I felt worse than ever. I went to the GI and got the blood test done about 5 days ago. The results should be back within 2 weeks. I also have an upper endoscopy scheduled for about 3 weeks from now.

Now, Im pretty sure that I do have Celiac Disease, but what if the diagnosis comes back negative?

Or even worse, what if I dont have Celiac Disease at all?

Then I would be all the way back at square 1 after having a mystery illness ruin my life for the past 7 years, including the majority of my school years and childhood. Im just nervous now and having my doubts. Most of all I feel like I need the positive diagnosis for anyone to believe me. If the diagnosis comes back positive and all I have is Celiac for sure, everything will be great. But if it doesnt...I dont know what I will do. Any thoughts? suggestions? comments?

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serenity0607 Newbie
serenity0607
Posted

you sound like me this is somethign i have delt with for about 3 years now and it just seems that i know and am fairly confident that this is celiacs but to me it's like the negative results would make me feel horrible and well for anyone to belive the fact and not have a positive would make me feel horrible!! but i'm trying to keep my hopes up !!! and you keep your hopes up too!!!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

You could have gluten intolerance which wouldn't show up on a bloodtest. If you don't like the answers your doctor gives you go to a different kind of doctor. I went to an allergist who was much more informed about Celiac and gluten intolerance than my primary doctor. She diagnosed me with gluten intolerance after my primary doctor blew me off when my Celiac panel came back negative.

KristinNicole Newbie
KristinNicole
Posted

I very much understand your concerns. For me . Celiac is pretty much my final attempt to really find out what is wrong with me. I have been to probably about 7 different types of specialists and a trillion doctors , I have had many many many viles of blood taken for pretty much every test in the book, I have gone through MRIs, CT scans, EKGs, EEGs, you name it I have most likely had it and everytime I get dissapointed usually to tears. Appearently according to all these tests.. I am the picture of perfect health. So I know how dissapointing that is and to be honest I am so used to it now that when my gastro tells me everything came back normal again for the tests for celiac. I will just feel numb. That is all I feel now is numb. I used to be upset and dissapointed and mad.. now ..I dont even know how to describe it. However atleast I am not alone here.

Good luck to you.. let us know when you find out what happens. Take care.

quietmorning01 Explorer
quietmorning01
Posted
If you want to know my whole story look at the my other threads and the one in "coping with" discussion about losing my childhood.

Anyways, I came to the conclusion that I do have Celiac Disease. My mom has Celiac Disease and I have many symptoms of it, Ive been researching what is wrong with me for 1 1/2 years now. I got the blood test twice about a year ago, and both times I had been almost all gluten free for a few months prior. They came back negative.

I have been eating gluten normally for about 8 months now, and added a +2-4 pieces of bread a day for the past 5 weeks. I felt worse than ever. I went to the GI and got the blood test done about 5 days ago. The results should be back within 2 weeks. I also have an upper endoscopy scheduled for about 3 weeks from now.

Now, Im pretty sure that I do have Celiac Disease, but what if the diagnosis comes back negative?

Or even worse, what if I dont have Celiac Disease at all?

Then I would be all the way back at square 1 after having a mystery illness ruin my life for the past 7 years, including the majority of my school years and childhood. Im just nervous now and having my doubts. Most of all I feel like I need the positive diagnosis for anyone to believe me. If the diagnosis comes back positive and all I have is Celiac for sure, everything will be great. But if it doesnt...I dont know what I will do. Any thoughts? suggestions? comments?

I think I'm wrestling with the same thing right now. I can make choices for myself to improve my health if I want to - but there's this issue of "Well, were you diagnosed for sure, yet? Is it definitive?" I have made the change in my diet, it's a noticable improvement, but I've been under cloudy diagnosises before, and it's hard. Not only does my support system find it difficult to support me in it, but other doctors do as well.

I think if my tests come out negative, I'm going to choose to stay on the gluten free diet, see an allergy specialist - and make it a personal choice not a medical choice. I think there's a difference, and people can choose to support me in it or not, it's up to them, but it would be up to them regardless. . . people go vegan every day.

So, I think that's where I'm at with it. . .

ang1e0251 Contributor
ang1e0251
Posted

There are three seperate problems with gluten: celiac disease, gluten intolerance or wheat allergy. There is no way to test for gluten intolerance. For that, your body has to tell you what it needs. If your tests come back negative, that's disapointing but not the end of the world. The remedy for gluten intolerance is the same for celiac disease; the GFD. You do not need a diagnosis for it, you don't need a dr's permission for it, you don't need a note from your Mommy, you only to make up your mind and do it

If you go on the GFD, keep a food journal and note your symptoms with it. This will be helpful with your dr's if you feel the need to discuss it further with them. I've heard of many allergists accepting this type of dietary response as proof enough of GI. I am self diagnosed. My dr doesn't completely believe me but I don't really care. I don't care if no one believes me. I feel better than I have in 30 years. Conditions that seem unrelated to diet have cleared up a great deal or have gone away completely. I listen to what my body tells me now. It isn't important to me if someone says such and such a study says this food is safe for you, if I react to it, I don't eat it.

Seek your own good health and stick to your guns. You know what hurts you and what gives you relief. Follow your gut!

samcarter Contributor
samcarter
Posted

I asked my GP to do a celiac blood test on me--he wouldn't do the full panel, but did the EMA, which came back negative. So obviously he wasn't going to be open to the idea of doing a biopsy on me. He was very dismissive about my suspicions that gluten was causing me problems.

I had a very positive response to a gluten free diet, and as far as my husband (who is a scientist) was concerned, that was enough to convince him that I have a problem with gluten. As others have pointed out, gluten intolerance won't show up on a blood test, but it is a real health issue.

Also, because you have an immediate family member with celiac, you may well have the gene for celiac. Just because it's not "on" now, doesn't mean it can't be turned on at some point in your life.

I don't have a diagnosis, but I live as if I do have one. And I'm healthier for it.

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Pegleg84 Collaborator
Pegleg84
Posted

I think if you feel better on the GFD, then stick to it. My mother, sister, and several of my family members have celiac and gluten intolerance, and I've been suffering increasing symptoms for the past couple years. of course, my bloodwork has come back negative twice, which at first made me wonder if it was indeed all in my head (which really does make you feel worse about it!). A few weeks ago, after feeling horrible after I ate anything, I decided to start going gluten-free, and I feel so much better, so something is definitely up.

so, diagnosis or no, if you feel better not eating gluten, then don't.

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