Frustrated And So Many Questions

[c.haines1178]

Hi everyone.  I am very perplexed right now and confused.  I did not have insurance 6 months ago when I was initially concerned that celiac disease was the culprit for me.  It was recommended I "try" gluten free for a few weeks to see if it helped and lo and behold it did, except for what I assume was the occasional cross contamination.

 

4 months in I called the doc (with health insurance finally) and wanted to talk about the issues I was having and told her that so much had gotten better gluten free and she suggested we do bloodwork (even though we knew having only eaten a bit of gluten here and there would give negative results). She wanted to see where I was at the moment.  Of course as predicted, celiac tests were negative, food allergies were all fine but it showed low potassium levels and low alkaline phosphatate levels. Several other things were just within normal ranges even though I take a multivitamin and additional b12 vitamins every day

 

She agreed that my symptoms sounded very celiac and that diabetes was ruled out previously (I have terrible neuropathy of the hands and feet) and refered me to a gastro doc for further testing.  I went in to him the other day and he basically said if I feel better off gluten than couldn't hurt to stick with that... but as much as I didn't want to do a gluten challenge, I did want to know. I have 3 boys, all with some weird symptoms of things.  He did bloodwork to send for gene testing just so I would know of the possibility and could consider testing the kids, but gave me no other reasons for how I could be having the issues I am having. 

 

I was 100% sure it was celiac.  Well he called last night and told me my results showed I didn't have either gene so I couldn't have it.  Now I am concerned that I could be dealing with something else that should be being treated somehow and what if it isn't gluten intolerance?  Well, like a moron I decided to have a chicken cheese steak last night as kind of a big F-U to gluten, lol. Big mistake.  Within the hour I had horrible gasiness, exhaustion, pins and needles in my hands, irritability and brain fog.  Today, still feel out of it.  Still hurting in my hands and back muscles and SO tired. I almost couldn't stay awake driving my son home from his dermatologist appointment for his stupid skin rash he's had for 4 months. 

 

I read different things. You can't have celiac without the gene.... you can have it.... you can't but can have intolerance, but then why am I deficient in things? And what if it's something else altogether and I'm just crazy-apparently not considering that cheese steak is still killing me....i'm so frustrated. I don't understand half of these numbers I read in articles on gene testing. Some say they have to test for genes other than the 2 standard ones, and others say they don't.  I feel like my body is not just reacting in the short term, but being affected and malnourished. I feel that way.  I have horrible teeth, itchy dry skin on my face lately, neuropathy and joint pain, random hives and bumps on my neck, and bloating/gassy pains.  I can just stop eating gluten, but I wonder if theres something underlying that I am missing. 

 

Is there some other conditions I should be looking at rather than just saying, oh it must be gluten?

[nvsmom]

Frustrating.

 

I think it could be one of two things:

1. You have celiac disease but he didn't do enough tests to catch it or you gluten challenge was not long enough.  1-2 slice of bread for 8-12 weeks if usually required for accurate blood tests.  The blood tests you want done are tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, and total serum IgA.  Those tests can miss up to 25% of celiacs so it is a good idea to run as many as possible.  As for the genes, most celiacs (97%) have the DQ2 and / or the DQ8 gene. It is possible to have celiac disease without those genes but it is unlikely.

 

2. You have non-celiac gluten sensitivity (NCGS).  NCGS has the same symptoms as celiac disease except the intestinal damage and the dh rash.  Those with NCGS can have neuropathies, ataxia, stomach issues, fatigue, and nutritional deficiencies (although it often is not as severe as a celiac).  I met some with NCGS who had worse symptoms than I have, so symptom severity tells you nothing.

 

I have celiac disease but I am deficient in no vitamins.  Vit A was a tad low but it seems to be unrelated to celiac disease because I can't change it after 2 years gluten-free.  LOL My teeth are also perfect - never had a cavity in my life.  Other symptoms I do have. Pain bloating and pain were mine. We're all different.

 

It seems that you know that gluten is a problem for you, so you need to avoid it as if you are a celiac... and just in case you are a celiac!  You might want to look into hypothyroidism testing too.  Google it and I think you'll see some of your symptoms could be due to an under active thyroid. In the meantime, go gluten-free and hopefully your problems will improve over the next several months.

 

Best wishes.