Gene Test Results

[OzGirl]

Hi everyone. I have been gluten free (fanatically so) since the 19th of August and have been feeling really well. Yesterday I went to see the specialist to get the gene test results and he told me that I had positive results to the gene test (ending in 2), the one ending in 8 was fine. He told me that 20% of the population carries the gene that I do and the only way to discover if I'm coeliac is to do the biopsy. After 24 hours of trying to eat gluten I'm feeling rotten again. The biopsy is in 3 weeks. I feel really reluctant to go through with this, as I was feeling extremely anxious and unwell before being gluten-free. In the words of the specialist, I am tall, healthy and don't look sick. He thinks it unlikely that I'm coeliac, but said that it would make me feel reassured to be told that I'm not coeliac. When I tried to explain that being gluten-free had made me feel so much better, he said that a lot of people did feel better when they cut out "windy foods like bread and broccoli". He said it would be a shame to go on a diet that I didn't need to do.

My mum passed away at the age of 52 after being diagnosed with cancer. Six months after diagnosis she was dead, although she actually died of starvation. The doctors right up to the day she passed away, told her that they couldn't understand why she couldn't keep food down. My maternal grandmother also died young from cancer. When I was only 32, I had surgery for bowel cancer, and although 8 years on, I have been cleared of that, I don't want to be complacent. When I questioned the specialist about coeliac and related family issues, he said that it would be beneficial to scope me so as to alleviate my anxiety, so I would know conclusively that I didn't have it. Should I do the challenge when it is already making me feel so awful ( IBS symptoms and anxiety)? Should I go through with the biopsy without doing the challenge? I really didn't feel like the specialist was listening to me and I left the appointment feeling like a hyperchondriac. Please help!!

[AndreaB]

You've been gluten free for a month and already started healing. Doing a gluten challenge for 3 weeks probably won't do much. If you had a lot of damage then there would still be damage now. I, personally, don't think the challenge is worth the pain for a possible negative biopsy. That of course is a decision you will have to make.

Do you need something definative? Have you considered enterolab?

If I'm reading correctly you have the dq2 and dq8? If so, you have 2 celiac genes. ICan'teveneatrice posted a link to a good site. I think it was Open Original Shared Link

I haven't looked too far into this site yet, but something happened to their daughter with the gluten challenge. I didn't read anything yet as I haven't had time. I also know that Penguin on this thread now has a bad allergy to wheat and if it touches her (ie. flour) she'll break out in hives.

Have you had a celiac panel done? What did that say? If anything came back positive with that, then you have celiac and don't "need" the biopsy. It's just considered the gold standard for official diagnosis. Many people advocate the diet change as proof.

[ravenwoodglass]

I agree with Andrea. If you eliminated gluten and got better then got sick again when it was reintroduced you have IMHO all the proof you need. You do not need this doctor's permission to live gluten free and there are GI doctors who will diagnose based on a clear dietary response. I was diagnosed with an elimination diet guided by an allergist. When I reacted I was sent to a GI who also wanted me to challenge again and have the biopsy so it could be proved to him. I did as he asked and when the morning of the biopsy arrived I was on the bathroom floor bleeding freely from my intestines and writhing in pain. He diagnosed me officially at that point. That being said if there are other pertinent reasons why he wants to get a look at your small intestine I might go ahead with the endo but if the challenge makes you obviously ill it should be your decision to continue with it.

[OzGirl]

Thanks to you both. I think sometimes it helps me to put something in writing to make what is obvious to everyone else, clearer to me! I guess in my mind the only reason for a definite diagnosis is the difference between knowing that gluten is a bad choice, as opposed to gluten is harmful (and to be avoided at all costs).

Andrea: I have never considered Enterolab an option as I live in Australia and I don't think we have an equivalent here. Sounds like the perfect idea otherwise! I have no idea if I have had a gluten panel done. My regular doctor dismissed coeliac from what I think were basic blood tests much earlier, and only pursued the gene testing thing when my chronic fatigue, and IBS were worsening.

Ravenwoodglass: Thanks for your thoughts...It's when I read comments like yours, that I flip-flop back to thinking "I'm not all that bad" ...as is so common the case when I read other's stories on here! All along I have realised that my symptoms are nowhere as severe as what most are suffering from...

I'm still confused by this...

If a person reacts badly to gluten, as distinct from having an intolerance to it, I'm assuming that gluten isn't harmful (in the long term). Is that the case?

Thanks

[AndreaB]

Sorry, I should have known by your screen name.

If you have an intolerance to wheat/gluten than it is best to stay away from it. You can do damage if something has triggered the celiac/gluten sensitivity. If it hasn't progressed to that point then realistically, you could leave off of gluten for about 6 months and add it back is small quantities to see if your body has forgotten it. With gluten I kinda hate to do that. If you do have an active sensitivity and genes that predispose to such than why play with fire?

If you have an allergy, that may be able to be resolved with time. I have a milk allergy and intolerance (both IgE and IgG). Even though I was mostly vegan for 3 years and only had dairy a few times a year at potluck meals I still tested allergic to it.

I don't know if that really answered your question. I'm not an expert on this and many people feel differently.

[Ursa Major]

Hi OzGirl, and welcome to this board. You have the genes, and obviously can't tolerate gluten. You will never outgrow the gluten intolerance, even if the doctor won't officially diagnose you with celiac disease (that would just mean that your villi aren't damaged enough yet for him to decide it's celiac disease). Gluten will never be safe for you.

Honestly, you have the genes, you feel bad on gluten and better off it. What other proof do you need? If I was you, I'd forget about the gluten challenge and that 'official' diagnosis, and just stay gluten-free. Why make yourself sick again? I see no point in that at all.

Actually, Enterolab will test world wide. They will send you the test kit by airmail, and then you have to send it back to them by courier (you pay the courier costs). Check out their site Open Original Shared Link If you have questions, they are really good at answering quickly by e-mail.