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Hi all,

 

these last few days I really need answers and support more than ever before. I am terrified because I have no idea what is going on with my body. I used to be a healthy person (or I thought i was) who ate healthy and exercised. These days I am constantly tired and in pain. It has been a year since I began following gluten-free diet and I have never cheated and rarely even eat at gluten-free restaurants. Prior to my diagnosis, I only had constipation so I did not even realize I was sick until I ended up in the hospital because I was so dehydrated, and they had to run multiple tests to find out why. After I was diagnosed, I did not have much energy, had these weird brain fogs sometimes but not bad in general. But for the last 9 months I started noticing other things. I have had problems with eyes, tremors, twitches, headaches and unfortunately no one is looking at me closely. I am not in the US and the doctors I get to see either do not speak English very well or do not really care. It does not help that I have some weird insurance so even finding a gp seems impossible. Apparently, I have been tested for a lot of AIs but I do not really know exactly which ones (I was never explained but I will ask next week) and I think they think that I am just making stuff up. They just tell me not to think about it, that I am not the only Celiac and people live normal lives, etc. When I ask them about getting tested for other things, they say they do not know where to send me since I do not have a gp. I have an appointment with the gastro dr. who diagnosed me next week. She already told me over the phone that while my tests have improved some there are still high. She seems nice but I also get a feeling she is tired of me (although I only contact her when I am supposed to but seems that she does not like when I ask questions). According to her, I do not need to worry about buying gluten free vitamins or using gluten free shampoo, lotions, make up, etc. However, I am still very strict about this and only use things I ordered from the US. 

 

These doctors are more interested in typing up results than listening to me. My life seems to be about dealing with these issues. I am a student and I spend more time feeling ill, scared, or at the hospital. My family and close friends have been supportive but I feel I am becoming a burden and while others are worried about graduating, finding jobs, and starting families, I live in fear of what the future will bring. I hate answering to the question-how are you? I just want to say I am ok.

 

Yesterday I posted a question about Gardasil because I would hate if I somehow contributed to this. It is possible that I inherited a gene from my mom (I was told I could not be tested here to make sure) so I wonder if by getting those shots I somehow activated it. A friend of mine posted an article on fb about gardasil and its possible connection with AIs.

 

This forum seems like a great place for answers and support. I want to write down all my symptoms and hear your opinion but at the same time I am worried that I will read something that will freak me out especially because I do not even have a doctor to turn to in case I want to check it out. I used to be positive and social and I am not anymore which I do not like at all. While other people have exciting things happening in their lives, I deal with medical issues and one person made a comment "so everything in your life is about going to doctors" and the way it was said was so rude and hurtful that I have not spoken to that person in 6 months. I look for private doctors, pay out of pocket for some tests but I still do not know why I feel the way I do. 

 

I do not know what to do...

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Celiac.com Sponsor (A8):

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I hope you find a doctor who can help you soon.I know how you feel about living in fear,I'm kind of like that right now I'm really scared too.Sorry I'm not of much help but just wanted to reply to you.Dont give up.Hope you feel better soon.


2010(Age 17)-Non hodgkins lymphoma(chemo,radiation)

2011(Age 18)-Bone marrow transplant.

2014(Age 21)-Diagnosed with Multiple sclerosis after mri and lumbar puncture

2015(Age 22)-Diagnosed with celiac disease after positive bloods and biopsy,secondary acute myeloid leukemia

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You mentioned you are in another country. Do you know what their labeling regulations are in regards to allergens and gluten? Some countries consider Codex wheat starch to be gluten free could that be in some of the processed products you are consuming? Many of us can't tolerate it even though technically it is gluten free. Could gluten be sneaking in somewhere either in processed food or from gluten eaters you are living with? Have you read the Newbie 101 thread at the top of the Coping section? If not do go there and give it a good read. There may be gluten sneaking in somewhere or you simply may be not fully healed yet.

Hope you feel better soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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If some of your tests are still high you may still be getting gluten. I thought my diet was gluten free when I avoided gluten-containing ingredients, but that wasn't enough for me. I was getting contamination somewhere. Maybe tell us more about what you eat?

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Thank you all for your response! I really appreciate it!

 

Since I am a student, I live in the residence hall. I have my own room with a small fridge but I share kitchen. However, I keep all my food and dishes in my room. If I have to use kitchen and see any bread crumbs I do not come anywhere near it. I also use oven a lot. I buy these special plastic baking bags, where I put meat and veggies in it and bake it. I feel much safer preparing my food that way so that I avoid any contamination.

 

I live mostly on veggies, fruits, and meat. Last month I did drink milk (i was not drinking it at all after my diagnosis, and then i would have a cup of coffee with milk once in a while but last month I drank a bit more 1,5l in 2-3 days), ate Vanilla Haagen Dazs ice cream (confirmed that it was gluten-free) and I did eat some gluten-free sweets (made of corn and nutella). I am wondering whether I am allergic to soy lecithin, corn. I also ate some ginger cookies (labeled gluten-free). I usually do not eat anything that is not labeled gluten-free, including rice, lentils, beans, etc.

 

On Tuesday I will insist on finding out what they tested me for. I really think that one of the reasons that doctors are not telling me things is because of their more relaxed approach to celiac and telling me that I do not have to worry about taking gluten-free vitamins, sounds crazy to me. Another reason could be the language barrier as they do not feel comfortable explaining it to me. I do not know.

 

I was truly hoping that my gastro doctor would try to help me more. I was not even told whether or not I should take vitamins and I was given only iron after I asked about it and it was low. Now it is in a normal range, but still on the lower side. It is unbelievable how tired I get these days and random muscle pain and weakness. I truly feel that people on this forum are more willing to offer advice than some of the doctors I had seen. 

 

Thank you!

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Regarding beans...you have to be careful with them. Some varieties are grown in the same fields with barley. In my last bag of pinto beans, I found 3 or 4 pieces of barley. Because of this, I don't eat any beans I don't sort myself. In other words, no canned beans -- even if they're labeled gluten free (I don't actually think I have ever seen that were). Almost every batch of pintos I've ever sorted had some barley in it.

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