Creating a Celiac Safe Kitchen

[Stacy Nelson]

I have been gluten-free for 20 years, but not gluten-free enough apparently. I just tested positive for celiac, have a non-healing duodenal ulcer, severe weight loss, and aggressive osteopenia. So now I get to clean out my kitchen and replace all my kitchenware that may have been cross-contacted from history of shared kitchen, and also shared facility cross contact. I am feeling overwhelmed when I start thinking of all the items that may not be able to be really cleaned and need to be replaced, so I am looking for feedback. I know pots, pans, colanders, tupperware, anything plastic, silicone, or wood. Do I need to go so far as to replace items that could have cross-contact from dishwater like to go mugs and blenders, kitchen towels and cloth napkins? ceramic cups? crock pot, rice maker? insta pot? Anything I may be missing or don't need to be so detailed about?

[trents]

Welcome to the forum, Stacy!

Can you give us more history on your gluten-free journey? If you just now tested positive for celiac after being gluten-free for 20 years, why were you eating gluten free in the first place? Were you ever actually tested for celiac disease 20 years ago or did you just diagnose yourself with a gluten disorder of some kind, say NCGS, and decide to go gluten free? Did you test negative for celiac disease 20 years ago but were having issues with gluten at that time?

[Stacy Nelson]

I started getting progressively more ill eating gluten starting with bloating and nausea. This progressed to vomiting followed by bloating for days. This was 20+ years ago. I do have other food allergies that are getting progressively worse as I get older. I thought I was being really good keeping gluten out of my diet, with the exception of shared facilities cuz I just couldn't deal with being that degree of limited. I have had a duodenal ulcer for a year and a half that I went on an extreme ulcer diet for 5 months and it hasn't been healing. I have had aggressive osteopenia for years and that is a concern. I went in for my annual check up and my dr. had a celiac test done and it came back positive. So either I am not doing a good enough job being clean or I have some other autoimmune issue. So I am supposed to clean my kitchen out and get rid of all potentially contaminated kitchen ware and not eat food cooked by others unless it is in a dedicated kitchen. I share a house with my parents who are not gluten free but we have separate kitchens. I was in a relationship for 20 years until 5 years ago with someone who was not gluten free so we sere just careful but I didn't separate wash water or pans or utensils. I just don't know how far down this rabbit hole to go, I have felt for years like I am losing my mind about food and now it's acutely anxiety causing. Any help with the details would be appreciated.

[trents]

Have you been consuming dairy and oats all this time? These two foods have proteins (dairy = casein; oats = avenin) whose structures are close to that of gluten. A percentage of celiacs react to them like they do gluten.

Do you take NSAIDs regularly? Are you on any blood pressure meds? One of them blunts the small bowel villi like celiac disease does.

Have you been tested for H. Pylori, SIBO (Small Intestine Bacterial Overgrowth) and evaluated for MCAS (Mast Cell Activation Syndrome)? These problems not infrequently occur in conjunction with celiac disease.

I certainly understand what you mean when you say you just don't know how far down the rabbit hole to go in making more effort to go gluten free, especially when gluten may not actually be the culprit.

[Stacy Nelson]

I do eat dairy. I have been eating oats for cholesterol control (non gluten-free now switching). So maybe cut both out? Ugggh. I am already already allergic to tree nuts, avocado, shellfish. chickpeas hurt my tummy. I hardly ever take nsaids. No blood pressure meds.

I was tested for H. Pylori, negative. I am thinking I should be tested for MCAS as I had an anaphalactic reaction to something that I called the manufacturer on and couldn't pinpoint anything.

 

[trents]

I sympathize with your food allergy issues. I don't know if you've ever had food allergy/sensitivity testing done (such as the ALCAT test) but when I've had those tests they show I'm sensitive/allergic to 30+ foods. You've got to eat something! And I'm not sure how valid those kinds of tests are as there are so many variables and there can be plenty of false positives.

What vitamin and mineral supplements are you on?

[Stacy Nelson]

I had allergy bubble tests done when I was young, covered entire back and both arms and upper legs. I got to give myself allergy shots from age 8 to 11 when I was allowed to start making my own medical decision to stop. I need to do more research on the alcat test, I have heard about false positives and am already so limited on what I can eat I don't want to unnecessarily limit myself even more. I take vit d and b. I am on so many allergy and asthma medications including inhaled steroids  and have been my whole life (they thought I had CF when I was little) so I don't take any more than I really need to.

 

[RMJ]

Oats that are not labeled gluten free when eaten regularly might be enough to cause symptoms and a positive celiac test.  Plus some people respond to the protein in pure oats. I’d eliminate oats and see what happens before throwing out much in the kitchen.

If removing oats doesn’t help, I think your plans are a bit overboard.  Metal pots and pans with smooth surfaces are fine. Smooth ceramic surfaces, like mugs, are fine with a good wash. I don’t have a crock pot, instapot or rice maker so don’t know what the surfaces are like, but if they’re smooth, cleanable and not plastic/silicone/wood they should be fine.

 

[DanMc]

I think it's most likely the oats and dairy. Gluten gives me a lot of trouble, but unfortunately so does cheese, milk, yoghurt, oatcakes and porridge. Exclude dairy and oats for a week and see if that makes a difference to your symptoms. 

[Russ H]

3 hours ago, Stacy Nelson said:

 I went in for my annual check up and my dr. had a celiac test done and it came back positive.

Could you share your test results? Values and reference ranges.

Most people with coeliac disease can tolerate 10 mg of gluten a day without provoking an immune response. This is the generally accepted as safe level. Wheat flour is about 10% protein, so 10 mg gluten is about 100 mg of wheat flour. Bread has a specific gravity of about 0.25, giving a volume of 0.4 cc. This equates to a piece of bread 1 cm or 0.4 inches in diameter, basically the size of a pea. It gives you an idea of how careful you need to be.

Doesn't sound like a contamination issue from utensils and cookware if you don't share your kitchen.  Do you eat out or at friends?

[RMJ]

3 hours ago, Russ H said:

Most people with coeliac disease can tolerate 10 mg of gluten a day without provoking an immune response. This is the generally accepted as safe level. 

This is true, but the crucial word is “most.”  Some of us cannot handle that amount and are super sensitive.

[Wheatwacked]

Dr Fasano created a list of foods to eat and avoid to eliminate all gluten.

Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

Have you been monitoring vitamins and minerals?  Gluten free products are not fortified.  Gluten products are fortified because as a whole our western diet has some built in deficiencies. When you add the effects of malabsorbtion from Celiac to loss of those fortified products with a gluten free diet. Double Whammy!

Iodine is an essential for healing.  It helps dispose of sick or aging cells, triggering new growth.  I just switched to Kelp from Nori (42 mcg).  The US upper RDA is 1000 mcg. In it is 3000 mcg.  They are smarter, have less cancer and really nice hair.

98% of the intracellular contents is potassium.  It sets up the electrostatic differential, helping molecules get in and out.  Americans eat only 3000 grams a day. The Daily Value for everyone over childhood is 4700 mg.

Most of the mitochondrial membrane is choline in the form of phosphatidylcholine.  Less than 10% of us eat the RDA.  Choline is also nerve transmission, a major nutrient for fat digestion (bile), RNA replication.

Then there are the B's.  The daily minimum is not enough to recover from illness.  It takes more energy.  There is no upper limit except for Folic Acid 1000 mcg, and B5.  The limit on B5 is to save us the discomfort of flushing while our bodies are adjusting to increased capillary flow.

Vitamin D is the mother hormone.  We evolved to be homeostatic at 80 ng/ml (200 nmol/L) but since the 1950's they've been scaring us with hypervitaminosis D, a very rare disease.  Add to that sunscreen to knock out endoginous vitamin D.  There are 1 million skin cancer patients in the US. There are 51 million with autoimmune disorders and osteoporsis. 41% Americans have 30 ng/ml or less. Something wrong with the picture?

Each essential vitamin and mineral has multiple functions so two or more difficiencies can cause similar symptoms.  Different reason, same effect; combining to make it seem that you are suffering from more than a simple vitamin deficiency.  You are suffering from malnutrition.

But malnutrition can not exist in America except for alcoholics and destitute people.

 

Edited July 13, 2023 by Wheatwacked