Trying To Cope...

[Juliette]

Hello everyone,

I've been gluten-free for 3 and a half months now. My stomach symptoms have improved slightly, but what really concerns me, and what I find it difficult to not feel overwhelmed by, is my physical symptoms such as weakness in my legs, faitgue, tingling and itchy skin, flu-like symptoms and a sudden feeling of instability and dizziness.

Does anyone else experience these and did they improve over time? I have been tested for vitamin deficiencies and they've all come back fine. I am not eating dairy, and am experimenting with excluding nightshades from my diet at the moment.

My first blood test was extremely positive for Coeliac, over 100, and I had a second blood test that said my anti-bodies had gone down to 20. Does this mean I'm slowly improving, or does it mean a small amount of gluten is still in my diet?

After this long of being gluten-free, and struggling with my symptoms, I have finally been booked in for a Upper Endoscopy, but obviously they want me to eat gluten prior to it. I just can't bear the idea of doing that to my body, and the doctors (who keep telling me different things) don't seem to understand how difficult it is. I thought I would try to eat some, and if it goes badly, then just give up and not have the test. What do you think? Is it worth going through the pain, and potentially setting myself back three months, just for a definite answer.

I have my University Graduation next week and I'm just scared I'm going to feel weak or dizzy or generally unwell. I get really frustrated and angry sometimes that things that should be enjoyable/easy for me, are so challenging and I have to use all my energy just to get through them.

Anyway, thanks for listening. I just wanted to talk to people who understand. One doctor told me my symptoms are normal and would just take time to heal, another told me I might have an underlying problem such a stomach virus, and a dietian told me my symptoms didn't sound like Coeliac at all. Needless to say, I am confused and frustrated!!

[WhenDee]

There's so much to reply to here!

1 -- If your blood test was so positive, why on earth do they want you to keep eating gluten until they do the endoscopy? Why are they doing it at all? I thought that was a last resort for people who were testing negative. My radar is pinging & wondering if someone is trying to run up the insurance bill... I hope a doctor or someone with more knowledge will chime in soon, because this seems really stupid to me.

2 -- Your symptoms sound like mine when I get glutened. That isn't good at all. It makes me wonder if you have another immune problem or food sensitivity. I am just realizing I have a problem with dairy - and my one IRL Celiac friend has a variety of immune problems & other food sensitivities. Hers is with nuts, mainly. But many, many Celiacs have other food/immune problems.

However, all those symptoms that you describe went away for me within a few DAYS of being gluten-free. They only return for a few hours after being glutened.

I would really suggest you make an appointment with an immunologist and talk to them. Because you have Celiac, and a strong positive diagnosis, you are in the realm of immunology & I say quit fooling around with the MDs and gastros. I have not yet found even one that even understood Celiac as well as I do (and I'm no doctor!). It may be that you don't need an elimination diet - some testing may show the problem.

I have a very close friend with Crohn's, which is a very serious intestinal problem, also auto-immune. The only doctor that has ANY idea what's going on is her specialist in Crohn's. Her regular doctors have NO clue. As many people as I know who have auto-immune problems these days, I think it's inexcusable that doctors are SO ignorant, but they are. As an aside - my mother-in-law's dietician gives her some of the most ignorant advice I've ever heard in my life. And she can't figure out why her diabetes is out of control... if your nutritionist is only that & not even a licensed dietician, please go elsewhere!

Get thee to a doctor who knows something... your life is just beginning & your health is too important to fool around with.

And many congratulations on your graduation!

[calgarywalker]

Hello Juliette,

I'm afraid I can't offer much advice on how long it takes to feel better, I've only been gluten-free for about a month myself and I'm still having my own challenges. What I can offer is some help with your graduation, having crossed the stage a few times myself. First, congratulations! Welcome to the post-grad world. Now some advice:

1) Yes, you will feel excited, anxious, nervous, scared and perhaps a little overwhelmed, dizzy and weak... just like everyone else receiving their diploma. Celiac might make things a little harder for you but when the moment comes pure adrenalin will carry you across the stage no matter how weak you feel.

2) As far as wobbly or shaky knees goes (if that happens), you'll be wearing a robe and no-one will ever see or ever know about it.

Try to enjoy the day. You've certainly worked hard enough already for it!

[mushroom]

I am thinking additional food intolerances too, as a previous poster mentioned. At about three months was when I first started discovering mine. I got very itchy skin, sometimes with rash, some places without, some places flaming red, sometimes hives. The flaming red itching was soy, the hives and itchy skin was nightshades. Since soy is such a common one for celiacs I would suggest that you eliminate that first and see if you experience any relief, since you have already got rid of the nightshades.

As far as the endoscopy is concerned, the only reason for doing this at this point would be to check if something else is going on besides gluten. But if your stomach problems have gone away I would think it is unlikely that they would find anything and no, I definitely don't think it's worse poisoning yourself for three months to confirm the diagnosis made by your extremely elevated blood count. It's all very well for doctors to tell you to go back on gluten, because they don't have to suffer - they just line their pockets from performing the procedure

Three and a half months is not a very long time to be gluten free in the scheme of things. It is very encouraging that your blood levels have dropped 80% and so long as you are very strict with the diet I would expect them to continue to drop. For some it takes up to a year to get them back to normal - normally they don't check them until six months in.

Congratulations on your graduation. Try to stop worrying and just enjoy the day as much as you can

[Fairy Dancer]

Hi, I get similar sorts of symptoms as you but I am not diagnosed with celiac disease as I have never been tested for it. However as I have a family member with the disease I am trying a gluten free diet myself to see if it helps. I have only been on it for about a week though and accidentally consumed some chocolate etc with gluten in by mistake during that period so...oops lol.

My general symptoms include:

Fatigue

Malaise (feeling unwell)

Brain fog

Muscle aches and spasms

Itchy eyes

Blurry vision due to weak eye muscles

Stuffy nose

Repeated infections in my teeth and teeth that are literally crumbling and breaking apart (molars mostly)

Episodes of Feeling shaky and weak all over (usually resolved by eating)

Migraine headaches

Ice burning tingling painful sensation mostly in the skin of my ears.

Feeling unsteady when I stand or sit up

Episodes of Vertigo

Salt cravings (of all things as I am not a great lover of salt lol)

Angular Cheilitis (sores on side of my lips)

Digestive symptoms include:

Acid reflux from hell

Stomach and Abdominal cramps

Passing frequent stools

Diarrhoea with soft foul (rancid) smelling slightly pale stools (most days although on some days my stools are normal)

Yellow mucus in stools (Most days)

I am hoping the gluten free diet will clear at least some of that lot up lol!

I hope your symptoms clear also and congrats on your graduation. Whilst I am older than you I am starting my degree later this year, so maybe one day I will get my graduation day too!