Scared og Gluten

[newmanky]

I have been gluten free for 4 months.  In the beginning I adapted fairly well to the life style and diet.  a Month ago I accidentally ate blue cheese not even thinking about it and I got glutened for sure.  I was SO SICK for about 2 it was how I felt before but 2x worse since being Gluten-Free.  Since then I am feel so scared of getting sick.  I am paranoid about every little thing.  I am constantly washing my hand and even cleaning my house even though it is  gluten free house hold.  cooking in my gluten free house I wash my hands after everything I tough in the fear that maybe the package had something on it from the store.  I feel this is over the top but I am too scared to get sick and take the chance?  I am scared about getting a drink at a restaurant (defiantly wont eat) in fear of the cups. Or a drink at the bar in fear of what may have touched the TITOs bottle. There are not a lot of resources where I live to talk with someone I tried seeing a nutritionist and i didn't get much more info than just going on the internet, and the therapist I saw had no clue about Celiac at all.  Is this normal? Or am I not coping well with this? 

[cyclinglady]

You are normal.  Who wouldn’t freak out after a gluten exposure that causes them to be sick?   Think of it as nature’s way of keeping you cautious.  Eventually, it will get better.  Your anxiety will decrease.  I firmly believe that anxiety is one of the 200 symptoms of celiac disease or any autoimmune disorder.  

It is probably a bit too “over the top” to worry  about traces of gluten lurking on store products.  You probably have a greater risk of picking up bacteria or a virus.  It is good that you wash your hands prior to eating.  We always wash up when we enter the house.  I think it is a good habit for anyone.  Now, bars are different.  Some get busy and do not use a dishwasher.  They can be sanitized in the bar sink, but it will not necessarily remove gluten fo beer.  So, do what I do.  Ask for a plastic cup if they do not use a commercial dishwasher.  Or order a bottle of water or cider and drink from the bottle.  Restaurants are just fine.  They most always have a dishwasher (at least in my state).  But again, you can ask for a to go cup.  

Reactions from gluten can become quite severe for some celiacs.  It happens to me.  So, I am extra careful.  Just  try to move forward and heal.  Again, your anxiety should diminish over time.  Anytime you need to vent or want to ask a question, a forum member is here to help!  ?

[Awol cast iron stomach]

Cycling lady gives great advice. 

I grew extremely fearful of gluten crumbs more than ever before. I also had a few years gluten-free before my  2 week gluten challenge . I was sick over 2 1/2 years and I was terrified of crumbs because I did become even more sensitive the more strict I got. I had to be more strict to feel my best etc.

I am still in that learning part CL mentions 

"Reactions from gluten can become quite severe for some celiacs.  It happens to me.  So, I am extra careful.  Just  try to move forward and heal. "

i hate when it happens and it still rattles me. My husband works real hard to remind me that it happens and I have to learn to accept it and move on and heal. I have even developed my comfort and routine to support healing using acupuncture etc, but it is still hard.

welcome, you are in good company on this journey.

 

[kareng]

Just an FYI - blue cheese is gluten free.  It is seldom ever grown on wheat and even for the expensive kind that might be, it tests gluten-free.  

Edited July 25, 2019 by kareng

[Ennis-TX]

The reactions are normal, I was super paranoid but I had severe neurological symptoms also,  I got glutened by so many odd things, in round about ways. I just became super vigilant about brands I trusted, and only buying products from certain places. Last few exposures were odd balls and abnormal. You become more comfortable and fall into a routine over the years to keep yourself safe.

[newmanky]

On 7/24/2019 at 10:00 PM, kareng said:

Just an FYI - blue cheese is gluten free.  It is seldom ever grown on wheat and even for the expensive kind that might be, it tests gluten-free.  

I know I actually ate at a restaurant and when I called them they said they had a dedicated space and it may have been the blue cheese.  I am so new to all of this I do not know what is safe and what is not.  Unfortunately the internet scares me more and more I look up.  I am just not sure if i am living fearfully when I don't have to like am I taking it to far over the top vs just washing hand before I eat.  I am talking i wash my hand maybe 7 times while I am cooking and before I eat.  Also re washing dishes after they were in the dishwasher weird stuff.  Anxiety was one of my major symptoms,  I thought it should be gone by now but I just had a check up and he said my TGI labs decrease a lot since diagnosis 5 months ago but they where still a little elevated and wants to recheck them in 2 months.  I just feel very overwhelmed and there is no resources where I live at all. 

[cyclinglady]

Well, you have resources here!  ?

My local celiac group is dying, literally.  Lots of older people and possibly some mis-management of the group as another city group is very active.  Some groups that gather to discuss illness can be over run by people who talk of nothing else but being sick.  Most of us are sick or recovering and we do not want to listen to the same issues over and over again.  

I am going to repeat that anxiety and depression is very common.  It will get better as time goes on.  You are still a newbie, but you sound like you are doing a great job and are on track.  Most of here take over a year to get well even if our followup blood testing shows improvement fast.  

Know that the TTG test was developed for diagnosing celiac disease and not for dietary compliance.  My DGP IgA was very elevated after a glutening.  I was going crazy trying to figure out how gluten was getting into my diet.  My GI suggested a repeat endoscopy since it had been years since my diagnosis, but I refused.  Instead, I trialed the Dr, Fasano diet which is super strict.  Eventually, I caved in and had the endoscopy.  Guess what?  Complete healing.  You could see the little villi on the super magnified scope.  Biopsies reconfirm healing.  Yet....I still had elevated antibodies.  Now, I have some other autoimmune issues and maybe my DGP IgA is elevated from that, but who knows?  Not my GI!  Not even Dr. Google.  I learned to gauge my healing on symptoms.  This works for me.  Not sure it would work for a celiac who is asymptomatic.  

You might have reacted to the mold in blue cheese.  My allergist told me that I have a mold allergy.  For a while, it got me out of having to clean the shower!  ?. But it appears that it is not life threatening and I am back to cleaning the shower.

Sometimes, we have no idea what is going to trigger reactions.  In the beginning of my gluten free journey,  I thought I was getting glutened from gluten-free bread.  Turns out I react and still react to Xanthan Gum.  My gluten-free hubby can handle Xanthan Gum, but not me.   I kind of pride my self on being able to spot gluten since my hubby was gluten-free 12 years before me.  But no matter.  I have learned we are all different and must find our own way.  

[Ennis-TX]

Cycling lady has some good points, I had some other issues and had some foods that just caused odd issues over the years due to food intolerance or sensitivities, even leaky gut causing odd reactions that went away after healing.
Examples for me
Xantham gum mimicked gluten with vomiting and pain
Yeast, used for bread again makes me vomit and pain
Soy made me bloat and distend really gassy and painful I still can not eat pure soy but traces and lectrin do not cause issues now
Red #40 made me flip and get hyde angry sorta like gluten used to, no problem with it now still avoid when I can.
Peanuts still to this day make me vomit for hours
I ended up with corn allergies, where corn causes blood blisters in my mouth and throat, swelling to some degree.
Stuff with Cellulose gel causes vomiting
Dairy issues, lactose intolerance with gas and D and whey allergy that causes coughing mucus, swelling, and pimples on my back/chest/face.
For awhile both olives and sesame seeds made me hurt and vomit for hours but went away after a few years.

Everyone immune system acts differently to different foods sorta why we suggest a whole foods only diet til it calms down and heals so fewer surprises.


 

[GFinDC]

Ennis is right, some of us react to many other foods besides gluten.  The continual irritation of the gut can lead to it reacting to other foods.  Also oats and dairy are not a great idea for new gluten-free eaters.  The damage to our villi make it hard to digest dairy sugar.  And some of us react to oats just like we do to gluten.

Being extra vigilant for gluten during the beginning of the healing process is a good idea.  Our immune systems are in overdrive then and the smallest amount of gluten can keep them attacking.  Whole foods and eating at home rather than at restaurants is a good idea.  Avoiding processed foods and eating only foods you cook from scratch yourself also helps.

B-vitamins are important for nerve health and being new to gluten-free you may be low on them.  That itself could cause anxiety and poor sleep.

Edited August 13, 2019 by GFinDC