Rock bottom and almost gave up, almost!

[TheWeatherMan]

Hello everyone, Lewis here from the United Kingdom.

I've been pretty ill for the last year or so, looking back there were always signs and early symptoms but I just ignored them/brushed them off. The real issues started around 10 months ago. I had a course of antibiotics (2 actually) and my gut was never right since, I think the good bacteria that was helping me get through some symptoms was wiped and as a result opened me up to everything.

So initially it started as IBS-D, certain foods where not agreeing with me (I was eating Gluten, bread/wheat flour, barley etc as normal). Regardless, over the years, probably since early 20's I had boughts of D and bloating, I just thought it was because I ate a lot and not always the right food (blamed it on my diet).

So I went to doctors in March of this year because I was feeling so drained, weak, lethargic and at this stage I became heavily depressive. Feeling like the world was caving in on me. Doubting myself and others around me and generally having no confidence in myself or anything I do in life whatsoever.

All of my bloods came back fine, celiac, chrones etc, even my iron/b12 and everything else was all in normal range from a full blood count. So I was left scratching my head. I walked out of the doctors feeling like a total bafoon because even my doctor looked at me as if to say it's all in my head (anxiety). 

It got to a stage in which even my girlfriend thought it was anxiety, nerves and my head not being right. Yes I had all of those symptoms but I am mentally stable, it was just something triggering these feelings, I had good days and I had bad days. I couldn't handle stressful situations, pressure easily got to me and some days I felt so down I didn't want to get out of bed, I just felt it was easier to avoid people and situations then to deal with them.

So the issues continued and other symptoms started appearing. Itchiness on my hands (top of the finger near my nuckles), it wasn't hives, just little clear dots that raised up like clear warts, brusing easy, heart rate increased after eating food, especially fatty and gluten packed foods. I kept going back to doctors and he said it's all in my head and one doctor said I'm too fat to have celiac. (6 foot 2, 18 and a half stone).

However when I eat less and take out Gluten/bread etc I can lose weight rather quickly. I've lost a lot of my muscle, I've had increaed muscle wastage on my bum and it continues. 

I started taking probiotics and it settled the bloating symptoms and IBS-D, however I was having periods where my energy levels didn't increase, I felt down, really miserable and just in general felt so weak. Doctor said continue with Gluten, I'm not sensitive nor am I celiac. So the last 3/4 weeks I've gone back to old my diet of heavily consuming Gluten and boy do I know it.

Before when I had the fatiuge, nausea and itchiness on my hand if I took a piriton it would fix all of those symptoms, if I then went a few days gluten free all symptoms would subside and my energy levels would increase, however I would soon eat Gluten again because I'm told I'm fine...

So the last 3/4 have been a nightmare. Not so much IBS-D because the probiotics have sorted that out but in terms of mood and feeling depressed, tired and not only that the last 3/4 weeks it has felt like I've got a permenant cold/flu. The itchiness is now body wide with my buttocks, back/lower back, arms and legs itching every day, with little bumps/clear spots coming up and grouping together in patches. I'm having to take stronger antihistamines just to stop the itching but it soon comes back when it wears off, tried all sorts of steroid cream over the last 10 days and none work. I'm on a course of antiobiotics from the doctor who said just in case it is a skin infection (I have developed a chest infection over the last couple of days which is another reason he put me on them).

I'm now fed up. I know I've got celiac but my doctor won't go any further with it. From now on I'm avoiding the Gluten completely and will treat myself and have a diet for celiac. I know my body and I know for a fact after all of the trials, testing, changing diets etc that something is going on with Gluten. 

I'm not giving up, time to be strong minded as I know this is going to be one hell of a ride. I just thought I would share my experience.

Keep fighting everyone.

Lewis 

 

 

[cyclinglady]

My hubby is not diagnosed.  He was gluten free 12 years before I was diagnosed with celiac disease.  If a gluten free diet works, then keep at it.  Good health is priceless!  

You might have Dermatitis Herpetiformus (DH) which is a celiac skin-rash.  In that case, read through the DH section. Those celiacs who have DH must be super strict on the gluten-free diet.  

Welcome to the forum.  

[Airlion]

I hear you. I have been suffering over 20 years and FINALLY in a few weeks am getting a biopsy! Part of the reason is that I have often just not eaten gluten. I did a blood test and it was negative, but that was after being gluten free. I had not been eating very much gluten. And I did a genetics test which came back as low probability. But I have read conflicting things about that too... so now I am LOADING UP ON GLUTEN for over 3 weeks for the biopsy. I have hives again, many sores in my mouth coming and going, TERRIBLE acid reflux, brutal C/D bowels... TMI if I describe it all.... and feeling light headed and woozy like I had a glass of wine after eating, along with post food sweats. 

I am hoping for clarity on this. If it is negative, then I just don't know what is up.... 20 years.... if it is negative I will go back to gluten free. It is obvious that I get sick from it. 

kj

[Trrygars]

I am confused, I had a biopsy which my doctor said showed I am celiac, the blood tests after said I’m not. So which am I? I am very gluten sensitive. 

[GFinDC]

Did you get a copy of your antibody tests results that you can share?  There are ranges for each test that vary by lab.  Sometimes doctors only do a couple of the screening tests and don't do the full blood tests with all the different antibodies.  And sometimes people are IgA deficient and none of the IgA tests are valid because of that.

You should have gotten these antibody tests:

DGP IgA

DGP IgG

TTG IgA

Serum IgA

EMA

Not everyone is positive on the blood antibody tests even if they have celiac disease.  And if you weren't eating gluten for the 12 weeks prior to the tests they aren't valid.