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Sitting On Pins And Needles

the2ofus

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the2ofus Rookie
the2ofus
Posted

I just sent my blood work off to Prometheus in California this morning. My doctor is waiting till I get that back to schedule my endoscopy. In all my reseach I am finding out that there is more wrong with me than I originally thought. When she does the endoscopy she is going to check for esophegal problems.

Are swallowing problems common in Celiac? I get very bad pains sometimes almost like a heart attack.

I am really hoping that my blood work comes back positive. It has to be easier to go gluten free than not have an answer to what is wrong with you. I have so many symptoms and I'm getting very confused. I have heard that the blood test isn't always accurate.

I have spent the last two weeks eating more gluten than I normally do. Fortunately my reactions are not a severe as some of you. I get a lot of heart burn but the diarrhea isn't daily.

Sorry this is so long but I needed to speak my nervousness to people who are there. In my daily life I get a lot of the "oh you'll be fine.""take the tests but I doubt that's whats wrong" Sometimes I actually am starting to feel like a hypocondriac (SP?). Then I read the list of sypmtoms and I'm back on track.

Thanks everyone for listening.

Robin

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LisaS Newbie
LisaS
Posted

the2ofus,

Was your doctor receptive to the idea of using Prometheus labs? Had he heard of them or used them before? I have my appointment on Thursday and I am taking my Prometheus kit with me, but I do not know how he is going to react to me suggesting a different lab.

Good luck, and be sure to post your results.

Thanks

Lisa

j9n Contributor
j9n
Posted

I am waiting for my results as well. Endoscopy this Thursday. I, too, just want an answer. Just tell me what to do to feel better and I will do it. I am sick of being sick.

I sometimes get painful spasms in my throat when swallowing. I have noticed it usually happens with bread products or pasta. It really hurts and I can not talk until it goes away. I have learned to eat very small bites.

I have people tell me it is just IBS and I have to live with it. Well, my doctor hasn't said that and I don't think waking up in the middle of the night doubled over in pain is normal and I really don't want to "just live with it". I want to feel better.

ashlees-mom Rookie
ashlees-mom
Posted

Robin, I just want to reassure you that you are not over-reacting! When we noticed my daughter wasn't following her growth curve everyone told us how kids grow differently, she was just petite, it was OK. Then when the constant diarrhea started it was just viral...for 4 weeks when no one else in the house had it!!! Well guess what, it was something, I was not over-reacting. We know when there is a problem, and unfortunatly, it is usually just up to us to find the solution. Hang in there and I hope all goes well with your testing and recovery!

Michelle

the2ofus Rookie
the2ofus
Posted
  • Author

Thanks everyone for answering me. I needed some positive feed back.

Lisa, did the doctor take your prometheus kit for real? My doctor was in the computer at prometheus but when I told her I wanted to use them she couldn't understand why I didn't want to use quest. I heard that quest doesn't do the test accurately all the time. I hope prometheus does.

If all my daughter and I have is IBS then I'll deal with it, but I'm not ready to lay down and play dead (sort of speak) without a guarentee that it's not celiac. One is an inconvenience and the other is life threatening.

Thank you and I hope everyone feels well,

Robin

j9n Contributor
j9n
Posted

Robin,

I just had my endoscopy yesterday and the results surprised me. I have a hiatal hernia and ulcers. Now the only problem I have had in my upper gi tract is pain swallowing. Now I know why. A friend has a hernia too and he said sometimes it is so bad he feels like he is having a heart attack. As far as the ulcer I had no clue. I dont have heartburn very often. And not usually bad enough to treat. It is a strong possiblity that I have h. pylori bacteria which caused the ulcer and possibly alot of my illness. I have to wait for the test results for two weeks, along with the celiac biopsy.

I feel like I am getting somewhere!

Janine

LisaS Newbie
LisaS
Posted

the2ofus,

I brought my Prometheus kit to my doctors visit, but to my surprise, my doctor accepted the Enterolab results and scheduled me for a biopsy on May 13. So, I did not need to send blood to Prometheus after all.

Lisa

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gf4life Enthusiast
gf4life
Posted
my doctor accepted the Enterolab results and scheduled me for a biopsy

That is great news Lisa! I am so glad your doctor accepted the results.

I have had mixed results with the Enterolab diagnosis.

My family doctor accepted it for me and ordered the blood tests for my kids.

My GI did NOT except it.

My kids GI doctor did not discount it for me and is willing to conscider that they might be accurate for my kids. He is still undecided, but keeping an eye on their progress with the gluten-free diet.

My sons rheumatologist/immunologist gladly accepted them and is not willing to say he is NOT Celiac even though the results show that he is only gluten intolerant and does not have the celiac disease genes. He says we don't know enough about celiac disease yet to know that we have isolated all the genes responsible for it.

The pediatrician in our family doctors office rolled her eyes when I made her add it to my daughters chart at her 5 year check up. She had already given her a clean bill of health and said she was growing just fine, when I gave them to her she just looked at me like I was crazy. Well I know my daughter is growing fine. She grew an inch the first month being gluten-free!

My sons neurologist accepted them.

Our family ENT accepted my word that we are all gluten intolerant, but I do plan to give him copies of the test results.

So I guess it depends on the doctor. Good luck with your biopsy. I assume you are still on gluten? I hope you are not too ill right now.

Robin, did they happen to tell you how long until you get the results? I am one of the people who are very down on Quest Diagnostics. Our blood tests came back inconclusive every time! I hope you get the results soon.

Janine, I also had a hiatal hernia when I had my second endoscopy done. I did not have it when they did the first endoscopy a year and a half earlier. I read somewhere that actually doing the endoscopy can sometimes cause a hiatal hernia! I think mine was caused by the gluten, and now that I have been gluten free for 4 months I have no symptoms of it anymore. I also did some alternative therapy to get the hernia to heal itself.

God bless,

Mariann

Guest Evelyn's mom
Guest Evelyn's mom
Posted

Hello,

Those of you that are using Enterolab, did you purchase the kits first and then bring the results in to the doctor or were you able to have your doctors order them for you? And, did any of your ins. company's cover them?

I feel like I just can't read enough, this message board has provided me with so much info..Thank you everyone!

RaeAnn

Guest gillian502
Guest gillian502
Posted

I did not use Enterolab, but from what I've read here doctors are not too keen on accepting results from them. :( I hope your doctor is really open minded and understanding, though, so the Enterolab process will be accepted as fact and you can have an official diagnosis for your daughter. Good luck.

the2ofus Rookie
the2ofus
Posted
  • Author

Hi everyone,

I was very impressed with Prometheus. I had my blood drawn on Monday. Airborne Express picked it up at 6:00PM. It was delivered on Tuesday morning, by thursday afternoon my doctor was faxed the results.

My numbers were all low and the HLA DQ2 and 8 genes are NOT present. I was thrilled to hear this.

Marianne, what have you heard as far as them not having figured out all the genes that can cause celiac? I was 100% happy till I read your post. Now I'm just 95% happy. I know more than dairy effect my daughter and myself.

Janine, What do you do for a Hiata hernia and an ulcer? I have my endoscopy on May 11. I guess with my blood results there is no need for the biopsy. I have heartburn almost daily. What kind of pain do you have when you swallow? I don't have pain then but I get kind of a tightening in the side of my neck into my shoulder. I also get that really bad pain in my chest that feels like a heart attack. It goes from my chest and through to my back. Many times when I swallow food gets stuck and takes a minute to work it's way down. This hurts.

I may not have celiac but I have gotten so much information on other problems from this message board that I'm going to keep checking in here.

Thanks,

Robin

j9n Contributor
j9n
Posted

I dont go back to the doctor until May 7th :( . I guess I just get to suffer until then. The only thing he said so far is to stay away from coffee, chocolate, alcohol, and spicey foods.

The pain when I swallow hurst alot. It doesnt happen all the time, just occasionally. The food gets stuck and I have painful spasms until the food is able to go down. It can last a minute or two. I dont know how he is going to treat this. I am going to eat small amounts during the day, it is bad to over eat. As far as the ulcer if it is h. pylori you can take antibiotics to get rid of it. He has me on prilosec otc. He did say that this can be the cause of all my problems. He still did the biopsy for celiac as he has not ruled that out yet.

Keep me posted on your results. I am curious if it is the same thing since the symptoms are so much alike

gf4life Enthusiast
gf4life
Posted
what have you heard as far as them not having figured out all the genes that can cause celiac? I was 100% happy till I read your post. Now I'm just 95% happy. I know more than dairy effect my daughter and myself

Robin, I am sorry that I made you question your results and diagnosis of no Celiac. I was told this statement by one of the few doctors I trust. What I think he meant about it is that those genes (DQ2 & DQ8) are the only ones they currently believe to cause celiac, but he also believes the lesser gluten intolerance genes are the same disease only not as severe. I think he would like them to be listed as the same disease. But then there is also the possiblity that they have not identified ALL of the genes that would predispose a person to celiac disease.

Do not rule out gluten as your problem. My sons do not have celiac disease genes, but they do have gluten intolerance. They have positive antibodies and show marked improvement on the diet. You may just be gluten intolerant and not Celiac.

God bless,

Mariann

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