Newly diagnosed and trying to find my way

[KrishnaM]

I was recently diagnosed as celiac after years of being told that I had crohn's (still trying to find out if it was misdiagnosis or if I get both). 😶

I've started eating gluten free and picked up King Arthur measure for measure flour. The first time I used it, intense itching on face, neck, and upper chest along with becoming Very conjested all withing 3p minutes..not fun. I really felt like I was going insane. 

I decide maybe it's a fluke and try again 2 weeks later with the same results. 

Has anyone else had this experience? I was reading that some people have DH, but I'm still very green on understanding that aspect.

Am I reacting to something in the flour? 

I don't have food allergies, though anything growing right now wants to kill me.

Is there a better option? 

All responses are appreciated. 

[trents]

Welcome to the forum, KrishnaM!

The King Arthur flour you mention has xanthan gum in it, an exceedingly common ingredient in man gluten-free baking products, which causes issues for many celiacs. Another ingredient in that flour, sorghum, is also notorious for causing celiacs problems.

If you do not have any food allergies you would be in a decided minority in the celiac community. The "leaky gut syndrome" commensurate with celiac disease is largely responsible for this. Have you actually had any food allergy testing done? You might want to look into ALCAT food allergy testing.

Edited August 30, 2023 by trents

[KrishnaM]

Thank you, I'll look into both of those. 

No, I've never been tested for food allergies. I've had digestive "issues" most of my adult life and was told crohn's 10 years ago....

I'll look into getting tested, it may help. 

Thanks again. 

[Hopeful1950]

Looking at the ingredients in that flour (see screenshot)I see some things that might be a problem:  xanthan gum and niacinamide.  I personally can't tolerate xanthan gum, and many gluten-free foods contain it.  Niacinamide could cause flushing if you are sensitive to it.  I am, and this flour would make me miserable.

Out of curiosity I went to their website and was somewhat shocked to see that they say two of their Gluten Free flours contain wheat.  See my screenshot below.

I would be very cautious of using their products. 

It will take some experimentation to figure out what gluten-free products you can trust and what ingredients don't agree with you.  They use all kinds of things to try and make stuff more like regular bread, cookies etc. 

Good luck.

 

[trents]

Other food companies also market products containing wheat as "gluten free". They subject the wheat to a chemical process that supposedly removes the gluten, or most of it anyway, to the extent of qualifying for the "less than 20ppm" that the FDA uses as a standard to allow companies to use the claim in advertising. And for a lot of celiacs, it would cause no problems. But it does cause problems for the more sensitive members of our community who react to even less than 20ppm of gluten.

[Hopeful1950]

6 minutes ago, trents said:

Other food companies also market products containing wheat as "gluten free". They subject the wheat to a chemical process that supposedly removes the gluten, or most of it anyway, to the extent of qualifying for the "less than 20ppm" that the FDA uses as a standard to allow companies to use the claim in advertising. And for a lot of celiacs, it would cause no problems. But it does cause problems for the more sensitive members of our community who react to even less than 20ppm of gluten.

I have heard about that process and I have also heard about some kind of "ancient wheat" that supposedly is safe for celiacs.  As someone who is super sensitive and after 10+ years of struggling to get DH under control I wouldn't risk it for sure!  I am okay to do without. 

Xanthan gum, inulin, chicory root, guar gum and the myriad other mystery ingredients that often appear in gluten-free foods at the store really mess with my digestive system so I avoid them like the plague.

[knitty kitty]

Some gluten free flours and baked products use Sulfites to bleach the gluten free flours to the nice "white bread" look we've grown accustomed to seeing with wheat flour.  

I've a Class IV Hypersensitivity to Sulfites, so I avoid products containing them.  

Einkorn wheat is the ancient breed of wheat.  It is NOT safe for Celiac people, though those with NCGS may tolerate it. 

Niacinamide does not usually cause flushing.  Niacinamide is the non-flushing form of Niacin.  Nicotinic Acid is the form of Niacin that causes flushing.  If one is very deficient in Niacin, the worse the flushing will be.  Flushing will become less and less the longer Nicotinic Acid is taken.  Taking smaller doses when starting Niicotinic Acid and taking it with meals helps to minimize flushing.  Flushing usually only lasts about an hour.  

Nicotinic Acid has been shown to help Dermatitis Herpetiformis.  I take Nicotinic Acid if I get a flare of DH.  Usually I take Niacinamide, but the Nicotinic Acid really cleared up my last DH flare quickly.

These might be of interest....

Nicotinic acid therapy of dermatitis herpetiformis

https://pubmed.ncbi.nlm.nih.gov/15412276/

And...

Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide

https://pubmed.ncbi.nlm.nih.gov/30390734/

And...

https://ods.od.nih.gov/factsheets/Niacin-HealthProfessional/

Edited August 30, 2023 by knitty kitty
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[KrishnaM]

1 hour ago, knitty kitty said:

Some gluten free flours and baked products use Sulfites to bleach the gluten free flours to the nice "white bread" look we've grown accustomed to seeing with wheat flour.  

I've a Class IV Hypersensitivity to Sulfites, so I avoid products containing them.  

Einkorn wheat is the ancient breed of wheat.  It is NOT safe for Celiac people, though those with NCGS may tolerate it. 

Niacinamide does not usually cause flushing.  Niacinamide is the non-flushing form of Niacin.  Nicotinic Acid is the form of Niacin that causes flushing.  If one is very deficient in Niacin, the worse the flushing will be.  Flushing will become less and less the longer Nicotinic Acid is taken.  Taking smaller doses when starting Niicotinic Acid and taking it with meals helps to minimize flushing.  Flushing usually only lasts about an hour.  

Nicotinic Acid has been shown to help Dermatitis Herpetiformis.  I take Nicotinic Acid if I get a flare of DH.  Usually I take Niacinamide, but the Nicotinic Acid really cleared up my last DH flare quickly.

These might be of interest....

Nicotinic acid therapy of dermatitis herpetiformis

https://pubmed.ncbi.nlm.nih.gov/15412276/

And...

Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide

https://pubmed.ncbi.nlm.nih.gov/30390734/

And...

https://ods.od.nih.gov/factsheets/Niacin-HealthProfessional/

Thee is so much more to celiac than I initially imagined. Thank you (all) for sharing, obviously this is going to ba a long learning process for me. 

Does anyone have a gluten-free flour that works for you that you'd be willing to share? Obviously picking one from the shelf with ge stamp isn't safe enough. 

How did you all find that you were sensitive to specific ingredients? Food allergy tests? Think I'm going to ask my doctor about that process....

[knitty kitty]

You may want to postpone getting any more gluten free flours until you have been checked by your doctor.  If exposure to King Arthur gluten free flour has caused breathing problems, that could be a sign of allergic anaphylaxis which may get worse (life-threatening) upon repeat exposure.  

Dermatitis Herpetiformis (DH) is an itchy skin rash.  There are pictures posted in the DH section of this forum.   Breathing problems don't occur in DH to my knowledge.

You may want to keep a food/mood/poo'd journal to keep track of your symptoms.  

A Low Histamine Diet can help.  I chose low histamine foods in the Autoimmune Paleo diet.   We can eat food containing high levels of histamine.  Our bodies can make and break down histamine, but sometimes our bodies get overwhelmed and our cup runs over.  High histamine levels in are bodies are a sign of inflammation.  Eating low histamine foods gives our bodies a chance to catch up.  Vitamin C and B12 and the other B vitamins helps our bodies process out the histamine, reducing inflammation, and reducing sensitivity to high histamine foods.

Hope this helps!

[KrishnaM]

2 hours ago, knitty kitty said:

You may want to postpone getting any more gluten free flours until you have been checked by your doctor.  If exposure to King Arthur gluten free flour has caused breathing problems, that could be a sign of allergic anaphylaxis which may get worse (life-threatening) upon repeat exposure.  

Dermatitis Herpetiformis (DH) is an itchy skin rash.  There are pictures posted in the DH section of this forum.   Breathing problems don't occur in DH to my knowledge.

You may want to keep a food/mood/poo'd journal to keep track of your symptoms.  

A Low Histamine Diet can help.  I chose low histamine foods in the Autoimmune Paleo diet.   We can eat food containing high levels of histamine.  Our bodies can make and break down histamine, but sometimes our bodies get overwhelmed and our cup runs over.  High histamine levels in are bodies are a sign of inflammation.  Eating low histamine foods gives our bodies a chance to catch up.  Vitamin C and B12 and the other B vitamins helps our bodies process out the histamine, reducing inflammation, and reducing sensitivity to high histamine foods.

Hope this helps!

Not going to lie,... this all feels very overwhelming right now. I've never heard of a low histamine diet, there is so much that I don't know. Reading through the blog has me googling so much, so many things I've never heard of. Have I been living under a rock? 

thank you for answering my questions... My allergist (not food but ... everything that grows) has recommended a histamine blood test I didn't really understand the reason but I think I will take him up on it.  

[trents]

KrishnaM, when you research histamine intolerance you will also need to research MCAS (Mast Cell Activation Syndrome) because the two are closely related. These are very common in the celiac community. Sorry to add to your feeling of being overwhelmed. Remember, celiac disease represents and immune system disorder and it brings along friends.