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SasaMinks

Symptoms Getting Worse - At The End Of My Tether :(

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Today I'm feeling really down and at bit at the end of my tether. I just don't know what to do and could do with some friendly advice :(

 

Basically I was diagnosed IBS years ago due to bloating/cramping/gas etc. Since my pregnancy last year everything has been so much worse though and my migraines/fatigue really stepped up to the point where I can barely function. I'm pretty sure I had DH during my pregnancy although it wasn't confirmed.

 

The doctor has tested my bloods but they were negative for celiac however my liver functions are elevated and so tomorrow I'm going for scans to see if I have fatty liver (apparently this raise in liver functions are commonly an early indicator of celiac). The doctor has reffered me to the gastro although that appointment isn't for another 6 weeks. In the meantime he told me to gluten-free as my symptoms have been so bad. (Although won't this affect my endescopy if I get sent for one??)

 

I've been gluten free for about 3 weeks but I've had a few mishaps here and there - at first I felt great but now I feel even worse :( In particular my migraines are terrible and I've started having horrible numb/tingly feelings down the right side of my leg/face which I didn't get before. Is this normal??

 

The whole thing is making me feel horribly anxious and down - I got married last weekend which was fantastic but all these symptoims really affected my big day. I feel like maybe it's not even celiac due to negative bloods - yet EVERYTHING else seems to be pointing that way - but I have no one to talk to about it and another 5 weeks before I see the specialist! just want to cry :'(

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Sorry to hear you are having such a rough time, but congratulations on your marriage. Wonderful, but exhausting :)

You are right that yot will get a more accurate biopsy if you are eating gluten. It is very common, it seems, for doctors to get this wrong. Or maybe they could see how bad you were and strongly suspect celiac or non celiac gluten intolerance.

A couple of thoughts to get through this.

Can you talk to the doctor and ask what they would diagnose if the biopsy is negative?

Maybe contact the GI and see if you can move it forward as you have been advised not to eat gluten. A call or note from your doctor might help.

Many of us here are NCGI or self diagnosed, and you will certainly find lots of help here as you move to a gluten-free diet.

Welcome to the board :)

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During weeks 2 and 3 of becoming gluten-free, I hit a withdrawal and that migraine was one I remember one year later. It lasted a good week and it hurt just to blink. I remember being incredibly fatigued and my mood was horrible... wasn't fun.  Your preesent symptoms sound like withdrawal to me. I'm guessing that if you stay gluten-free, it will pass soon.

 

But, like Celiac Mindwarp said, try to get your appointment moved up. If you are gluten-free for a period of time it can affect any endoscopic results so they appear as (false) negative.

 

On page 12, there is a list of the sensitivities of the various tests for celiac disease. Sensitivity shows how many cases of celiac, out of 100 celiacs, each test would catch. If your doctor only ran one or two tests, it is possible that you had a false negative.  http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

I hope you feel better.

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Thanks everyone I really appreciate your replies and support :)

My doctor has been Very very vague - he didn't seem to know what the endescopy looks for and when i said going gluten-free might affect it he said 'well it doesn't really matter you will probably just be told your ate intolerant anyway and will have the same advice to go gluten-free.' i had to push to see the gastro because i git fed up of him telling me it was ibs! Im in the UK so can't change doctors really though. Also being in the UK means long wait times - i was lucky to get the wait i did - the other gastro wait time was 12 weeks!!

I was wondering if it could be withdrawel? How long can withdrawel last? I do feel a tiny bit better today fingers crossed it lasts!!

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From a super-sensitive 30+ years of symptoms viewpoint which hopefully you don't share:

 

I went gluten free just over a year ago.  For about 3 months I felt like I was in withdrawal, or was having cross contamination  problems.  After that I went grain free and had another 3 months of fatigue and fogginess.  After a year I cut buckwheat and had fatigue and fogginess again!  BUT now, I have a clear mind and am feeling better.  I have found  my worst days, are often followed by my best days.  You will experience hills of difficulty, bumps, and odd twists, but you will be walking in the right direction.

 

I haven't run out of helpful things to do yet.  The hardest one seems to be wait.  The body is working on healing.  I heard once for every 7 years of damage, it takes 1 year to restore.  Do whatever is reasonable and see how it goes.  Every person on this forum has their own path and own treatment system.  I trust you will be able to figure yours out over time.

 

Get better.

D

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