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I'm Positive For Celiac :-(!

Electra

By Electra
in Coping with Celiac Disease

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Electra Enthusiast
Electra
Posted

Well I finally got my results and I am positive for Celiac. The test said you had to be less then 7 on the antibodies and mine were at 19.6 and the titer said that I needed to be a zero and I was an 80!! I'm so relieved yet so stressed. I have to continue to eat Gluten and make myself sick until I can get into the gastroentologist for the scope in who knows how long UG!! I just hope they put a rush on it and get me in ASAP!! I'm getting really sick again and I'm not sure how much more I can take :-(!! At least I know now what has been wrong all these years, but boy does it suck to get this news and feel overwhelmed by the "how are we ever going to survive this" question UG!!

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chrissy Collaborator
chrissy
Posted

you don't HAVE to do the biopsy---but i do remember that you wanted a definite medical diagnosis. i hope you can get into the GI and get the scope done soon.

Guest nini
Guest nini
Posted

your positive blood test IS a positive dx, and you do not need to do the biopsy IF YOU do not want to. If your Dr. is pushing it, ask why? Ask if you can go on positive blood work and positive dietary response. The biopsy can only confirm that damage is occuring, it can never ever ever rule out Celiac especially with positive bloodwork. So, since you have your answer, why wait any longer? Why do the biopsy? You know you have this.

happygirl Collaborator
happygirl
Posted

If you want the biopsy, keep eating gluten and get it.

If you don't want the biopsy, then go gluten free.

Your decision, not the doctors! :)

Electra Enthusiast
Electra
Posted
  • Author

I just have no idea how it works. I'm not sure my Dr. has ever even tested a patient for Celiac before. I think he's under the impression that the biopsy is where we go from here, but he is setting up an appt with the gastro specialist so that he can tell me exactly what needs to be done. I also suggested he set me up with a nutritionist in the meantime so that I can start getting educated on my soon to be gluten free lifestyle.

Right now I'm so overwhelmed. I had all the signs and I knew in my heart that I had this, but I was actually in shock when he told me I was positive. I have been negative for everything for so many years that it doesn't seem possible that I could actually know what in the heck is wrong with me. I'm 100% positive my daughter also has it and that would mean that I probably have to quit my job. I have a home day care, but the issue is that I can not have a 2 yr. old not allowed to eat things that the other kids eat, and I can't possibly afford to feed everyone elses kid a gluten free diet. Man I am just so sick right now I wish they would put me on disability for a year just so I can start getting healthy UG!!

Oh well off to worry about X-Mas and how I'm going to fake feeling good for the next week or two!!

happygirl Collaborator
happygirl
Posted

I think that you'll find that there are many parents on this board of children who live relatively normal lives and are surrounded by gluten....they just learn to do things differently.

Guest nini
Guest nini
Posted

Well, a lot of Dr.s are still operating under the "biopsy as gold standard" rule, but the tide has been turning to Dr.s who are realizing that the biopsy only confirms it, but can't rule it out because it can miss entirely too many Celiacs who either have patchy damage or are in early stages.

The thing with nutritionists is you will probably have a hard time finding one that knows more than YOU about the gluten free diet. You can probably get way more information on this site than through a nutritionist. But that too is your call. After my diagnosis, which was by positive blood work and positive dietary response (my Dr. said that I did not need the biopsy at all because my symptoms all pointed to Celiac and with the blood test results as highly positive as they were, the biopsy would be redundant and it was more imperitive to get me feeling better immediately as I was very close to death.

It truly is YOUR decision. The blood work has diagnosed you, the biopsy will only confirm it, it will not change your diagnosis in any way shape or form, it can show you to what extent you have damage IF they find damage yet, and if you wait to have the biopsy at least you can get through the holidays eating whatever you want. Although for me, I wanted to start on the path to feeling better right away. One thing they don't always tell you, when you do go gluten-free you will go through a withdrawal period. THIS IS NORMAL. You will get through it.

It is not the end of the world. Focus on what you can have, not on what you can't. And as far as your daughter is concerned, yeah she probably has it too. My daughter does. And you don't have to give up your work if you don't want to, there is a way to make it work. You can feed your daughter things that are similar to what the other kids eat, or you can just feed them foods that are NATURALLY gluten-free. It's really not that expensive or difficult. And it's healthier.

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Electra Enthusiast
Electra
Posted
  • Author

well it's just that my daughter is only 2 and I'm not sure I can handle my sickness, the transitions and having her be put through that all at the same time. I'm just so overwhelmed right now that I couldn't think rationally if I wanted to UG!! Off to take some pain meds because my foot is swollen up huge and my neck, back and ribs have been so sore for days that I can hardly even stand. I've got to rest or I'm not going to make it through this. Thanks so much everyone for being such a great support. I hope the pediatric Gastro is a good one and will realize that since I am positive for Celiac and she has a rash that's consistant with Celiac that she has it even though her antibodies indicated she didn't! I just want a diagnosis so that when she goes to school and stuff I can make sure they take me seriously when I tell them how dangerous certain things are for her to eat. More to stress about UG!! Thanks again everyone you are all so helpful and kind!!

Guest nini
Guest nini
Posted

Angie, I know what you are going through. My daughter was only 3 when I was diagnosed. It's never fair and it's never good timing, but isn't it good that you found out now and can prevent your daughter from having the same kind of health problems as you? That's what gets me through. Focusing on how much heathier I am for her, and how much better it will be for her to not have to grow up with the label of being a hypochondriac because the dr.s coulnd't find anything to explain why she didn't feel good and didn't want to eat. My daughters blood work was negative, but with my positive diagnosis and her overwhelming positive response to the diet there is no doubt that she has it too. My daughter used to have this horrible hive like rash all over her body. One time it was so bad on her face that her one eye was swollen shut.

You can do this. Please feel free to e-mail me or PM me any time, I've been there and I can assure you it will get better. my e-mail is nisla@comcast.net

evie Rookie
evie
Posted
well it's just that my daughter is only 2 and I'm not sure I can handle my sickness, the transitions and having her be put through that all at the same time. I'm just so overwhelmed right now that I couldn't think rationally if I wanted to UG!! Off to take some pain meds because my foot is swollen up huge and my neck, back and ribs have been so sore for days that I can hardly even stand. I've got to rest or I'm not going to make it through this. Thanks so much everyone for being such a great support. I hope the pediatric Gastro is a good one and will realize that since I am positive for Celiac and she has a rash that's consistant with Celiac that she has it even though her antibodies indicated she didn't! I just want a diagnosis so that when she goes to school and stuff I can make sure they take me seriously when I tell them how dangerous certain things are for her to eat. More to stress about UG!! Thanks again everyone you are all so helpful and kind!!

Someone back a few postings wrote of reasons why you might want to not have the endoscopy and just start the diet, another reason might be that the longer you continue eating gluten you could be having more damage to your intestine lining. My Second gastro wanted me to have another endoscopy, first one did not show much damage and he was unsure. but I had been so sick, lost so much weight and energy I said 'no'...I was not sure I would survive eating gluten for 3 months. I feel I was right and he said"presumed celiac", that is what is on my chart. But some people want that

designation for insurance purposes or etc.

Since your daughter has skin sores I believe she can be diagnosed by scrapings and will not have to have endoscopy. I feel so bad that small children have to have this problem but have also read of people who grow up knowing how to cope and adjust better than we who are older!! Best of luck to you, know you have a lot of decisions to make but it will all workout in the end. :) A friend (celiac too). evie

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