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1st time was about 20 months ago and it was borderline then
then two months ago it was raised at 25
then three weeks later on a higher gluten containing diet went up to 26
then last week after about 8 weeks of tonnes of gluten it went down to 7!!!
I feel really stupid exploring the celiac route now. a I didn't have the two common genes b levels in blood weren't that high to begin with c negative biopsy. All the stats say 'highly unlikely' for all of this. But of course, I know from reading in here that it's still possible.
Lots of my symptoms could be put down to celiac, plus the constantly anaemic even when taking supplements thing..... I'm a bit lost again. But am continuing with the diet, but I'm finding it really hard to keep the motivation when preparing all the gluten food for my family and not seeing the result in my recent blood test. I was so shocked when it came back negative, I really expected it to be a lot higher than my last 26
just another question regarding the similarity to eczma: is it possible that if someone had DH and it was being treated as eczma, that constant use of a steroid cream would help it?
I'm thinking of my daughter who suffers from 'eczma', but will never forget a couple of years ago, whe broke out all over her hands and feet with what looked like school sores, or ulcers, the Dr said it was the worst case of eczma he's ever seem. It just flared up like that one day, although she always had some degree of eczma on her hands and feet.
Has anyone ever had their levels go down while eating gluten?
I recently had a biopsy which was negative. I was eating increased gluten during the 8 weeks leading up to my biopsy, but I just got the results back from the final 'base blood test' I requested. I wasnted one final blood test before going gluten free, so I could compare it in 8 months time after being strict gluten free. (I got the idea from here )
But my level of Ttg has gone down from 26 on a light gluten containing diet down to only 7 after two months of heavy gluten.
My GP still wants me to stay gluten free for a few months to see if my iron levels go up. He's thinking maybe it's gluten intolerance causing the malabsorption....
But gluten intolerance would not cause raised auto immune antibodies would it?
So I guess the initial raised Ttg must not be gluten related at all.... Luckily I did get this base blood test, or I would have assumed in 8 months time that my negatie blood test was due to being gluten free.
Also, I've only been gluten free for 6 days and my head is clearer, and belly a bit less bloated.
Yeah it is hard, and is especially distressing when you have young children who need and deserve a lot more of me than I have given them / have been able to give them...
No, I'm not going to pursue anything else just yet. Over the years, I've spent a fortune on this, that and everything else. I've had so many tests, scans etc etc and its always a case of back to the drawing board. But I cannot deny, I felt better gluten free, except, like I said in your thread, that I still wasn't quite quite right, but would have still been having traces for sure.
The other thing is that they recently discovered that I'm Insulin Resistant. When I am gluten free, I will be able to better fine tune the dose for that medication, and I'm hoping that between having my insulin resistance sorted, eating low GI and gluten free, that I'll lose weight etc and still hoping to feel better. IF in 8 months my tTG hasnt gone down then maybe I'll push to find out what other autoimmune disease I have(???) but that's the immediate plan
Well it came back negative I'm upset with myself for spending so much money on something I knew had a significant chance of coming back negative even if it was positive....
I don't have any of the other conditions that cause the raised tTG, and it's going up slowly, so I'm taking it as celiac disease, like you've all been telling me over the past months I just wondered if early osteo arthritis might cause the raised ttg, but apparently it's the autoimmune one which can cause that, which i def dont have.
So I have an appointment with Dr on Monday to take one last base blood test and then I'm gluten free strict strict strict for at least 8 months. Then I'll do a repeat blood test to satisfy my own curiosity. But I'll commit to 8 months. I hope to feel a lot better soon too
Thanks for all the advice and support, sorry I've been such a pain with all the waiting etc My husband doesn't want to hear about it anymore, I guess I've been unbearable..
thank you so much for taking the time to post all that. That is really very interesting to me, that you went gluten free, but would have still been having all the traces of it that I would have, and although so much better, still not quite right, that's just what I was like. I was ok, as long as I didn't try and do any physical activity etc, but still not quite right.
I think I'm still in the wrong frame of mind. When I see our similarities, ie put on weight, not the big D but even C etc, the mental / emotional stuff etc aches pains.
I think I must still be stuck in the old mindset that a 'proper celiac' is wasting away and with D etc. I know this isn't true, obviously I've read it etc, but since I've been struggling for so long, it's hard to have real hope, of actually getting better.
You've inspired me again this time, to be extra strict. I'm waiting for my results before I start my gluten free diet again. This is because if it's negative, then I'm going back to get some more bloods done, since I expect it will have gone up again in the past four weeks, and then I'll go 100% ( ) gluten free, and then re test in 8 months time. Hopefully this will convince myself properly without any doubts. I may even get the Dr to agree, but the most important thing for me is to properly convince myself how strict I need to be.
I'll keep a look out to see what you decide to do. It's not easy is it
See everything else on my panel was negative, and my ttg wasn't overly high, but definately positive. It was borderline 18 months ago, and is obviously increasing. I just have to be patient a teeny bit longer
looking forward to seeing the results on this poll.....
Your reasons are the same as me, I have three children, and would pursue testing for them etc.
I also am around your age and feel like a pensioner. In fact some pensioners are doing a lot better than me. I'm 38 years old.
I also have a history of episodes of depression and anxiety, but with me, it's hard to know if some of it is gluten related, stress related, or postnatal.... the one 6 month period I was gluten free was the most positive and clear headed I ever remember feeling. I remember marvelling at how easy it was to think! Like my mind felt like silk compared to before.
I too think about other's not taking my diagnosis seriously without an actual diagnosis ie hospitals, airlines, family, friends etc.
The other reason I decided to pursue it for to give myself more of a definate reason to stick to the diet strictly. When I did it for the 6 months, I cut out all of the big gluten, but I didn't worry about the cross contimination thing, which may or may not explain why I still had fatigue(?)
I can't tell you what to do regarding going to a diagnosis, since you probably already know about all the chances of the false negatives etc. It's a gamble isnt it.... only you know how important it is for you. It was important to me to try. I know I'd always have wondered. Sorry I'm not much help to you, but I just wanted you to know that reading your post gave me hope.
I could have written your post word for word, except the warm cheek thing, plus I have increasingly sore knees and stiff joints etc. right down to the increasing suicidal thoughts!!!
You gave me hope, because it made me remember that I didn't feel like this before, that before this challenge, I felt pretty good except for my fatigue, and fogginess (I was still gluten light).
I have been doing the challenge for about 8 weeks now, and I'd forgotten how bad, depression, anxiety etc I'd become, and the aches and pains. I had started to let it all become part of me.
I look forward to feeling better soon.
If you do decide to go ahead with the challenge, try to remember what you were like 16 days ago, and don't lose yourself the way I have. It's hard to be clear when everything is so foggy etc...
If you dont' really need the diagnosis then, I would just go gluten free again.