Mast Cell Activation with Gluten reaction

[KelleyJo]

I have Celiac,  have had issues with Mast Cell Activation Disorder, and have hypermobile Ehlers-Danlos Syndrome.  My current research says they are all related somehow with the comorbidity rate at 49% for two of them.  I couldn't find the stats on having all three.  I'd sure like to connect the dots better than that and understand WHY.  My MCAD mostly disappeared when I went through menopause.  The few times it has returned is when I am reacting to gluten, such as I did when I was cross-contaminated at a friend's house last weekend.  Do other people on this forum have these disorders as well, and is it normal to have wheezing and itching and need my inhaler when I'm having a reaction to gluten?  Does anyone understand how these are all related?  I've read so much research on this, but almost all of it says they are related, but not how they work together.

[Wheatwacked]

Hi @KelleyJo.   Welcome to the forum.

1. People with hypermobile Ehlers-Danlos Syndrome (EDS) are more likely to have low levels of vitamin D.
2. Vitamin D plays a key role in stabilizing mast cells and preventing their inappropriate activation

3. Vitamin D: A common deficiency in people with celiac disease 

4. most people reporting mast cell activation syndrome (MCAS) reported benefitting from high-dose thiamine, 

5. Vitamin B1 (thiamine) deficiency, also known as beriberi, can cause neurological issues that are similar to those that can occur in people with hypermobile Ehlers-Danlos syndrome (hEDS):

6. Acetylcholine (Ach), the main cholinergic neurotransmitter, can inhibit the release of histamine in mast cells. 

7. There isn't much information about choline and hypermobile Ehlers-Danlos syndrome 

My vitamin D 25(OH) D blood test stays around 80 ng/ml (200 nmol/L). To maintain that level I take 10,000 IU a day and get tested four times a year. If I stop, my level drops quickly. I started in 2015. In 2019 my level was still only 47 ng/ml.  Blood level goes up slowly. Since 2014, improved my mental and physical status.  Low D is associated with every autoimmune disease that has been researched for vitamin D.  If someone says vitamin D is not associated with a certain autoimmune disease, my guess is that there is no research on it.

My response to being glutened now is only sniffling and sensitive eyes, several days later, as oposed the the gut issues I used to get.

Vitamin D toxicity is very rare and usually a result of taking more than 50,000 IU a day for months.  

Edited 1 hour ago by Wheatwacked

[KelleyJo]

I take 5k ius of vitamin D a day.  Increase it?

[Wheatwacked]

I started a 1000.  Worked my way up over time until the third day at 10000 it was "Wow this is sunshine in a bottle.  But yes.  A good idea to get your blood tested for PTH and 25(OH)D though as a precaution. There is a belief the old people should suppement them together for osteoporosis but after 50 years the evidence still does not support it.  Besides calcium supplements are often simply ground up oyster shells.

Best to get calcium from food sources.

Most of the negative reports of hypercalcimia are studies done with conbination vitamin D and Calcium supplements together.

[Wheatwacked]

Don't underestimate the value of thiamin.  I get a cramp in my feet after sleeping about an hour and a half, sometimes.  It points my big toe straight up and twists my ankle.  Getting up, relaxing my ankle and doing anything for a half hour works, but then it comes back.  I found that 250 mg 3 times a day and it doesn't happen.

[KelleyJo]

The MD had me triple my daily vitamins B already.

[Wheatwacked]

Good start.

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1000 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle

1000 mcg B12 - creates hemoglobin for oxygen transport

500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

[KelleyJo]

I've noticed a big improvement in some of my eye reactive allergic symptoms since I started taking krill oil daily.  I don't do iodine because I have no thyroid. (I'm 23 years thyroid cancer free.) I figured I get enough from other things from my diet to maintain what else needs iodine. I actually know what has iodine very well, as I had to go on the low iodine diet yearly to prepare for my whole body scan for the first five years after my diagnosis:  potato peels, carrot peels, and any other root veg peels, dairy, soy, iodized salt, fish, seaweed, shellfish.