Newly diagnosed

[Guest]

Hello, I’m 28 years old and gluten hates me. I do not currently have health insurance and have already spent an arm and a leg getting to where I’m at. I started my gluten free diet 6 months ago (dec, 2022) and my body is still fighting me everyday.
 

To make things worse my siblings and I have all discovered we are group B strep carriers and my immune system still hasn’t recovered. I know this disease typically affects new borns and the elderly with lung, urinary, and skin infections. But being immunocompromised makes me worried for meningitis and such. I know that those fears may be irrational to some, but I have already had a history with cellulitis and staph infections involving the skin. 
 

Has anyone else developed such skin infections? Other than the gluten rash, which I thought was just really bad razor burn for the longest time. 
 

What advice do you all have for someone just starting out gluten free? What vitamin brands work best? And does the urge to eat an entire loaf of bread ever go away?
 

Much thanks, Shen

[trents]

Welcome to the forum!

We routinely recommend and adult multivitamin, B-complex, sublingual B12, D3 (5000 to 10,000 IU daily), magnesium glycinate or magnesium citrate (not magnesium oxide), and zinc. The brand isn't necessarily important as long as you confirm they are gluten free. A lot of my vitamins I get from Costco. Their Kirkland Signature and Nature Made products are generally good quality and will state on the bottle or box if they are gluten free.

Studies show that most people who claim to believe they are eating gluten free are actually eating lower gluten. This is particularly true of those who still patronize restaurants. I'm offering this link just as a check list for you: https://duckduckgo.com/?t=ffab&q=gluten+free+101+celiac.org&atb=v352-1&ia=web

Many celiacs aren't very sensitive to trace amounts of gluten. They get no GI distress but it's still harming them in a sub-clinical way. This group is particularly vulnerable to cross contamination issues and they can get a little lax about it because they don't experience distress.

You mention you have "gluten rash". Do you mean dermatitis herpetiformis (aka, DH)? Have you been biopsied for DH?

[Scott Adams]

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

 

 

 

[knitty kitty]

Welcome to the forum!

Yes, the urge to eat an entire loaf of bread will go away.  

Our bodies crave that bread because traditionally bread has been a source of B vitamins and some minerals for us.  

Gluten based breads (made from wheat, rye or barley) are required by law to be enriched with vitamins and minerals.  Bread has vitamins added to it.  

When we go gluten free, we cut out the bread to avoid gluten, BUT gluten free facsimile foods are not required to be enriched with vitamins and minerals.

We must get those vitamins and minerals from other sources like a nutritionally dense diet or supplementation.  

Supplementing with the eight essential B vitamins, other vitamins and necessary minerals will improve our health.  CeD damages the small intestine where vitamins and minerals are absorbed.  Supplementing with over the counter vitamins and minerals ensure that we are getting sufficient vitamins and minerals needed to heal our intestines and our bodies.

Checking for nutritional deficiencies is part of proper follow up care for new Celiacs.  A B Complex vitamin, Vitamin D, magnesium, and zinc are good supplements to take.  

There are eight essential B vitamins.  Niacin or Niacinamide (Vitamin B3) is great at calming the Dermatitis Herpetiformis rash. 

Thiamin Vitamin B1 has been found to be instrumental in controlling bacterial overgrowth and infections.  

I like Life Extension brand of vitamins, but there are others that are gluten free as well.  Choose a brand that doesn't add fillers like rice flour.

Try the Autoimmune Protocol Diet.  It helps reduce inflammation so the digestive tract can heal.  Basically veggies and meat.  

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

[Guest]

On 8/9/2023 at 7:54 AM, trents said:

Welcome to the forum!

We routinely recommend and adult multivitamin, B-complex, sublingual B12, D3 (5000 to 10,000 IU daily), magnesium glycinate or magnesium citrate (not magnesium oxide), and zinc. The brand isn't necessarily important as long as you confirm they are gluten free. A lot of my vitamins I get from Costco. Their Kirkland Signature and Nature Made products are generally good quality and will state on the bottle or box if they are gluten free.

Studies show that most people who claim to believe they are eating gluten free are actually eating lower gluten. This is particularly true of those who still patronize restaurants. I'm offering this link just as a check list for you: https://duckduckgo.com/?t=ffab&q=gluten+free+101+celiac.org&atb=v352-1&ia=web

Many celiacs aren't very sensitive to trace amounts of gluten. They get no GI distress but it's still harming them in a sub-clinical way. This group is particularly vulnerable to cross contamination issues and they can get a little lax about it because they don't experience distress.

You mention you have "gluten rash". Do you mean dermatitis herpetiformis (aka, DH)? Have you been biopsied for DH?

Yes DH, that’s how I got my diagnose. I thought I was just breaking out in a weird staph infection from razor burn. I do eat out and frequent restaurants, but I am a chef myself so I would like to believe I can ask the right questions and modify things to fit my needs. But I find myself always sick still. 

[knitty kitty]

Eating out is like playing Russian Roulette.  

You and I might know the right questions to ask, but there's no guarantee the kitchen staff will actually be as careful as we need them to be.  

I've gone to restaurants, been assured by the manager a gluten free meal would be provided, then served a salad with croutons.  

They don't have a clue until they've been through it themselves.  

Take better care of yourself.