DanteZaffar

39 minutes ago, Bev in Milw said:

Based on the amount of gluten in typical US diet, our bodies have a really high tolerance for gluten. While it  makes us sick, from inflammation, poor digestion/limited absorption of basic nutrients, & specific vitamin  & mineral deficiencies, it doesn’t kill quickly.  By this time celiac is dx-ed, our immune system are usually over worked & under fed. 
  Once dx -ed & on GFD, gut starts to heal & immune system function improves both in its ability to find gluten & to response to it. Basically, immune system is on high alert & fully armed so traces of gluten  can set off reactions that are as bad or worse than  those pre-dx.   
   You’ve reached that point so it’s time to go through products you’re using & look for little things like Vit E from wheat germ in your lip gloss/shampoo. (In our group, one member’s 10 yo got sick after usual Friday shower in mom’s bathroom with HER shampoo before going to grandma’s for weekend. Sister was doing same  in girls’ usual bathroom &  shampoo. Took months to figure out.).  
   Could also be ‘natural flavoring’ from barley (in some chocolate chips) which isn’t wheat-no allergen label.      One of thyroid meds (Abie?) was made on non-dedicated line. For those who got a 30 or 90 day Rx from a contaminated batch, the small trace amounts over time caused major problems, esp brain fog. 
    Read up on where cn where cross contamination can occur….shared cooking surfaces, seasoning blends.  Ice cream is made on a frozen line that can’t be washed between flavors —Vanilla is ‘plain base’—always made 1st on clean line, chocolate w/ darkest color/ flavor is last. Cookies & cream/glutn is in between.  
  Keeping food diary can help. Steno notebook/spiral at top works best.  
Put date at top  of page…List what you eat in Left column & draw a line —your clock, before lunch, dinner, & bedtime snack.   Symptoms get listed in Right column in the appropriate time frame.   
    If you notice symptoms happen with a  certain food, but not every time, you start tracking brands or locations (if eating out) to narrow down suspects.  
  Spiral at top of pages makes it easy to slide pages up to compare reactions & foods on different days . Notebooks with side spiral & taking pictures aren’t as convenient for making needed comparisons.
  You will need a last 3 weeks of data to start figuring things out.  I prefer starting at back of notebook so  most recent info is on top. (I also don’t have to write on wrinkled pages.)

If taking Rx, keep track of refill dates & make friends with pharmacist or find new one who ‘gets gluten-free’…
    For OTC meds, brand name manufacturers have advertising budgets & change suppliers  frequently to keep costs low.  
Generics w/ gluten-free labels are safer/cost less. No ad budget, more $$ for long- term suppliers.  

Many gluten-free ingredients are new to our diets.  I’ve met people who reacted  to rice, tapioca, xanthan  gum, carrageenan, canola oil, to name a few. Most hadn’t noticed problems before dx because items weren’t eaten regularly .Personally, I avoid potato starch found in most gluten-free items.  It’s naturally high in nitrates that give  me bone pain & blisters 

Saw a note in nutrient text that said ‘enriched foods’ provides ~60% of B vitamins in typical diet. I like multi’s  with thiamine HCl because the acid  helps with absorption (Teader Joe has one at decent price.)   Since Vit C &  B’s are water soluble, probably more effective to take half in am & pm..lower doses/more often. 

Sounds like you are healing about on schedule.   Keep up the good work!  Don’t be embarrassed/ afraid to ask a lot of question when eating out.  Takes a long time—years actually, to figure out that you won’t starve to dead if you have to skip a meal but ‘Nothing tastes as good as gluten-free feels!’

There are  2 Basic Rules for gluten-free.   
     1. Read every label, every time! 
     2. When in doubt, leave it out!      
   ( I also like— “With celiac, anything can happen & usually does.” )  

I was dx in Dec1981 when incidence was thought to be 1 in 5,000. 2 kids of my kids-5 & 3, got clinical dx then.  By late 90’s, Mayo Clinic put  prevalence at 1 in 2,000,  Results of study done by European drs in US to validate tTg antibody testing for use in US estimated  prevalence to be 1 in 134 with only 3% diagnosed. Awareness campaign followed & within  -1O yrs rate of dx jumped to 18% before stalling.  
  Since antibody testing is specific for dx-ing celiac, it’s only done IF dr suspects celiac & orders test. Because of my dx, my daughter was screened/ biopsy dx in 2007, along w/ 2 grands, & 2 more since ‘20. (3 of 3 kids, 4 of 5 grands.)  
  Unfortunately, symptoms of celiac are still unknown so drs don’t test, leaving 80+% of sufferers un-dx. Given the odds, getting a dx is truly a blessing and GFD has never been easier than it is today thanks to allergen and gluten-free labeling laws.   
  Congratulations on you dx!   

 

 

 

 

  

 

 

 

 

 

 

 

 

 

 

Thank you! This is very helpful I’ll start looking over everything and writing down what I may be recent to. I suspect minor gluten or another intolerance. Do you have any advice on how to possibly expedite my healing process? I’ve heard taking different herbs and vitamin supplements but it’s a bit overwhelming for how recent I’ve been trying to keep track of my diet. Doing my best to feel better since I’m heaving so many annoying symptoms 😕 

24 minutes ago, trents said:

Multivitamin products are seldom potent to offset the vitamin and mineral deficiencies that typically result from long term undiagnosed celiac disease. We commonly recommend sublingual B12, a B-complex 5-10k IU of D3, 400 mg daily of magnesium glycinate, and zinc picolinate. The forms of certain vitamins like magnesium and zinc are important since it has a significant impact on absorbability. If you live near a Costco, the Kirkland Signature series and Nature Made lines are good quality choices and economical. And they will indicate on the packaging if they are gluten free.

Do you think it’s a vitamin issue that could make celiac symptoms worse during recovery ? 

2 hours ago, trents said:

Are you addressing possible/probable vitamin and mineral deficiencies through some serious supplementation?

I’ve been taking a multivitamin however my doctors appointment is not available till next month for any specific vitamin tests 

I’ve been avoiding oats and dairy and simply been eating more Whole Foods but I somehow always have symptoms.. I tried eating different food for a week including eggs meats and veggies alongside gluten free brown pasta and somehow I still managed to wake up today with a headache, anxiety, and just gi distress. It’s very annoying but I’m trying to find a suitable diet since I’m so young and just want to heal my intestines before moving onto things like milk and oats. I had a fear for awhile that I may have refractory celiac but I’ve noticed it wasn’t very common amongst newly diagnosed people.

Hello, I’m only 20 and recently got diagnosed with celiac disease. I’ve been gluten free for around 2-3 months now but still feel miserable with bouts of gi symptoms that can come and go. I’m not sure what I’m doing wrong since I’ve cut back on a lot of food and eat more Whole Foods alongside using my own plates and such to  avoid possible sites of cross continuation. Recently my gi symptoms seemed to have gotten better but now I’m having a tension headache and some bouts of anxiety which were characteristic of my state when I first started out in the gluten free diet. Am I doing something wrong for these symptoms to come and go randomly??? Or is this normal for the healing process to be so random. I’m scared that I might have unresponsive celiac or refractory even though it would be highly unlikely…

On 5/17/2025 at 7:37 AM, MelissaClinPsyD said:

Hi everyone,

I hope this is the right place to post this, I am new to the forum though hopeful my research is relevant to someone reading this.

I am a Trainee Clinical Psychologist currently conducting research on Coeliac Disease at the University of Surrey and my research has been approved by an NHS committee allowing me to advertise online. My research is a doctoral thesis involving a 3-session online cognitive behavioral therapy group intervention, developed by myself and a current patient with Refractory Coeliac Disease, designed to reduce anxiety in those diagnosed with Refractory Coeliac type 1 and 2. This intervention will include evidence based support to reduce anxiety for a form of coeliac which is currently under-researched in regard to wellbeing. Coeliac UK have sponsored this research thus each participant will receive an £8 shop voucher per session they attend (each session will be held on Microsoft Teams at least one week apart with questionnaires on anxiety, quality of life and symptoms taken before the first session of the group, after the second and a month after the third), and findings will be shared with them, Coeliac UK and published.

If you are currently diagnosed with Refractory Coeliac Disease and are interested in taking part in this online group or have further questions please feel free to respond to this post, or if you feel more comfortable sending me a private message here, I am happy to send you a link to my study to sign up. 

Does this require proof of having refractory celiac? I’ve been gluten free for a couple months but still feel miserable but I’m not sure if its refractory celiac disease.