Attempting a gluten free diet + other medical questions

[SWG]

I've been bothered by symptoms for many years now.  Visual problems, sensory problems, muscle twitching, digestive issues (abdominal pain, diarrhea, sudden onset of lactose intolerance), and increasingly brain fog.  Either in addition, or because of, these symptoms I've been struggling with anxiety problems.  I've been to more doctors and specialists than I can remember over the last 5 years.  Possible MS, possible Lyme, possible sarcoidosis, but normal test after normal test for everything.  Last year I had horrific gastrointestinal issues, including vomiting, nausea, and basically being unable to eat anything.  After a battery of tests, doctors diagnosed me with a defective gallbladder... But no gallstones.  Had it removed.  Symptoms are better but still persist.

Blah.  Anyway.  Just for giggles I figured I would try a gluten free diet for Lent as experiment.  Its been almost two weeks and for a while, I felt better in terms of disposition, energy, and brain fog.  For the last couple days, I got hit with a nasty cold and it feels like a relapse.  My brain is a mess, my anxiety is back, and the sensory symptoms have been acting up (not to mention persistent insomnia).  I don't know if this is what being 'glutened' feels like, I don't know if getting sick is related.

With that said...

1) Does anyone have any feelings in their experiences to explain these occurrences?  Do they sound familiar (either gluten related or otherwise)?

2) I'm doing this gluten free thing as an experiment.  My diet has been spot on, but I didn't realize that things like sponges or cookware/utensils could be undoing anything this whole time.  But I'm also not sure I want to invest in a lot of kitchen stuff for something that may end up being temporary.  Is there any way to still use my current plastic/wooden utensils and Teflon cookware?

Thanks in advance to anyone who read this.  It has been a great resource for my own diet during this period.  You may see a lot of fad diet visitors or hypochondriacs so I hope I'm not intruding in place of more actualized gluten intolerant folk.

[Gemini]

As you have many symptoms that fit a Celiac profile, I would HIGHLY recommend that you have an antibody panel done and gene testing. Insist on the gene testing because that test is very important and can tell you right off the bat whether you have the genetic predisposition to trigger for Celiac. A positive on that does not mean you have it but means you have the genetic make-up for it to be a real possibility.

With Celiac, you absolutely have to buy new wooden spoons, ditch all plastics and old Teflon pans that are scratched up.  These can harbor left over food particles that can make you sick. I know it sounds bat sh-t crazy but it's our reality.  It is a really good excuse to buy yourself some nice new kitchen stuff.

Have you actually had any Celiac testing done?

[SWG]

Not formally.  I've had an endoscopy last year when my GI symptoms really peaked but it came back normal.

A random thought by the way... someone on this site once described Celiac/gluten intolerant people as being short and skinny.  I'm very short and incapable of gaining weight, which stuck out to me.  Additionally, my entire life I've had unsightly dark rings under my eyes (I work in a school and a student recently asked me in earnest if I wear eye shadow... I'm a male).  My sleep is fine but I read that this can indicate active allergies, so that was a second piece that put me on this trail.

Ill have to be much more careful with food prep.  That's one of the odd things about this... if I don't see improvement, there's always this nagging doubt that I screwed up somewhere and I wouldn't know it!

Thanks for the quick response!

[Gemini]

Celiac's can be short and thin.......I really hate the skinny word. It's as bad as calling someone fat and no, I am not lecturing you!  I am 5' 4" tall (if you want to consider that tall!) and weigh around 110-112.  Because I was always so thin with undiagnosed Celiac, people thought I had an eating disorder so I am sensitive about the skinny word.  Silly, I know.  I was down to about 92 pounds at diagnosis and still do not gain weight easily but I am healthy.

Those of us thin people usually present with classic Celiac Disease, which means what you will hear from a doctor.........thin, malnourished people.  But make no mistake, you can be clinically obese and have Celiac disease because the disease has morphed and changed from how it used to present in years past.  I think it may have something to do with genetics in how people present.

Dark circles under the eyes denote allergy. Celiac is not an allergy but an intolerance......an autoimmune disease. But people with Celiac can often have many allergy problems and I fit that category.  I have started allergy treatment through an allergist and I hope it works as well as it has in the past. 

I think you should have a Celiac panel done but if you choose not to and want to just go gluten-free, you must accept that you have to be careful and not cheat. If you do actually have it, this is very important.  Whatever symptoms you are having should go away, over time, if you do the diet correctly. But cc is very real and will keep us sick.  Give the dietary trial at least 6 months because it can take that long.

I wish you much luck with whatever you decide!

 

[squirmingitch]

Be advised that if you decide to do celiac testing you MUST be eating a gluten diet. If you have gone off of gluten or even gone "gluten light" then you will have to do a gluten challenge for testing. Here is what a gluten challenge requires:

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If you are indeed a celiac, you should know that going gluten free as a test bears repercussions when it comes to doing a gluten challenge for testing. We have much stronger reactions to gluten when we go back on it for testing. Many have such intense reactions that they simply can not complete the gluten challenge and therefore never get the diagnosis. Just food for thought.

BTW, like Gemini, I too am a short, thin celiac. 5'2" and presently trying like hell to get back to my 103 weight but keep hanging up at under 100. At my lowest point pre diagnosis, I was 91 lbs. A walking popsicle stick.

Ha Gemini, I too despise the word skinny! It's an insult. And I swear if one more person told me to go eat some cake I might have slapped them. I could out eat men who were 5 times my size but it didn't do a bit of good.

I would also like to mention that a test run for celiac by going gluten free really needs to be at least 6 months long if not a year. The first 6 months to a year can be a real roller coaster for celiacs. Up & down & up & down. Some days or weeks feeling great and then BOOM! the bottom drops out & you feel like total crap. It takes time for our guts to heal and until that happens we don't feel consistently "normal".

[GFinDC]

Hi SWG,

I suggest you go back on eating gluten and get the blood antibodies tests done.  It does sound like you had a positive reaction to stopping gluten.  But it is good to know for sure if you have celiac disease or not.  It's easier to stay on gluten until the testing is done.  The tests aren't accurate if you aren't eating gluten.

The follow-up testing is an endoscopy if the antibodies are positive.  Since it is a life-time diet change it's good to get tested first before doing the gluten-free diet.