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Meg123

More Blood Results In After Three Week Challenge

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Hello Again :)

I just wanted to add an extra thank you for everyone for all the help and information and support etc. I think we're all lucky to have this meeting place. Also to the long term informed members here and moderators etc, I think you are amazing to come in time and time again and answer the same questions from new people who are lost in their own health distress, searching for answers.

I was in here 18 months ago looking for answers, and some of the same members helped me back then, and are still here helping pple.

Anyway enough soppy stuff ;)

I only did three weeks of the gluten challenge as I started getting nervous when I started shaking and heart started pounding, so went in for blood test too early. I abandoned it and was just going to go gluten free.

Original tissue transglutaminase IgA : 25 units

after three weeks it was 26 units.

It only went up one unit, but it was enough for it to be more of a positive according to the folks at the lab. Because in the notes on the last one it said borderline / positive, and this time it said Low positive....

I have decided that I need to explore the biopsy route. If it comes back negative, I'll still go gluten free of course, but I am curious to see if it comes back and also what other damage etc they find, considering I've been malabsorbing for at least 8 years, and other symptoms for at least 4 years. Also I think it might be good to be seen by someone who might test me for other deficiencies etc and then help more with supplements more than my family GP can.

Anyway, I was just wondering if you think only going up one unit is indicative of a celiac disease, in a three week gluten challenge, or if it should have gone up a lot more. Bare in mind I was already on gluten, only much lighter.

Thanks

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My mother just went through a similar thing, and her units didn't go up at all, it said negative, she has been getting negative blood work back since she was 23 (shes now 46) then she finally got offered the biopsy and had it and she most definalty has celiac disease! I hope you do go for the biopsy and have a clear idea, its always good knowing whats going on!

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Well it did go up even in that short time so IMHO that would indicate you have an issue with gluten if you also had an increase in symptoms during that time.

As for the endo if you are going to have one done you really need to go back on gluten full force for a couple months. Does the thought of that send shudders down your spine because you know you will be very ill during that time? If it does I would consider myself diagnosed.

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Well it did go up even in that short time so IMHO that would indicate you have an issue with gluten if you also had an increase in symptoms during that time.

As for the endo if you are going to have one done you really need to go back on gluten full force for a couple months. Does the thought of that send shudders down your spine because you know you will be very ill during that time? If it does I would consider myself diagnosed.

Do I need to really go in hard on the gluten intake? Like a serious serve with each meal? The thought of it makes me sad more than anything. Sad for my three young children who aren't going to have much of a mum for a while longer. I just want to be well, but I also know I need to see what comes of the biopsy if anything.

Definately scared at the thought of loading up as much as I did before, I don't think I'll do that again if I can help it.

Here is Australia there is all this talk of a cure / vacine which is going to released in about 5 years, but it's only going to be given to those with a biopsy confirmed diagnosis.

Truthfully, I know I have issues with gluten, I do know that, but even though I hear what I'm being told re the positve blood test, because it was such a low postive, and because I didn't have the genes, I just don't feel convinced it's def celiac disease.

I know this sounds wierd, but I just hope it is, because then I've got a chance of finally being well again. I know I sounds strange,but I'm scared it's not celiac. Either way, I just want an accurate result.

So to get an accurate result, do I need to eat as much as possible? Or would 4 x weetbix for breakfast and a sandwhich at lunch time be enough?

I'm not going to wait the 18 months on the waiting list, we are just going to have to pay the big $$ and I'll go private, I'll have to pay if off in instalments or something. (different health system here than in the US)

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The advised intake for someone who has been gluten free or gluten light is 3 or 4 slices of bread a day for two to three months and you may still have a false negative. As for the celiac 'vaccine' well I don't know if I would put any money on that really being an answer for us.

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I believe there was another thread on the vaccine and it was for diagnosed celiac's with the DQ 2 gene only, I think. Someone correct me if I am wrong.

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I really don't know anything about the vaccine, so really should not comment, but it's hard to believe it could be that simple as a vaccine.

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The way I see it, this "disease" is telling us there is something wrong with the way we are eating. Even if they made a vaccine, I don't think I would want it. I am eating way healthier than I ever have.

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