Myoclonus Ataxia and Refractory Celiac Disease

Very interesting.

Hi I have been gluten free since 2017 when diagnosed with celiac disease.  My blood test IgA was off the chart also have dermatitis herpetiformis rash. I have continued to have diarrhea and have had nausea also. Have had breath tests but came back with intolerance to sugar alcohols and chicory root. Have taken out of diet but still have diarrhea and nausea. My blood was taken IgA and is even higher than before. Recently was told my other rash is psoriasis and a positive for psoriasis arthritis.  Having  iching and burning in arms and legs with no rash worse when go to bed. My concern is if I have refractory celiac? My dad had non-hogins lymphoma and I know that cancer is high in celiac disease. I have been sick and so tired lately.  Went to my Dr he thinks it's only a virus.  I think it might be a lot more.  Ant advise???

Are you still consuming dairy and oats, even gluten free oats? Those two foods contains proteins similar enough to gluten to cause celiac reactions in a certain percentage of celiacs. If you have dermatitis herpetiformis you also want to be on a low iodine diet.

No dairy or oats . Even stopped corn rice  pork and beef. Very frustrated! 

@Dawn Meyers,

Have you tried the Autoimmune Protocol Diet?  It's a Paleo Diet that cuts out processed gluten free foods, grains, legumes, nightshades, dairy, eggs and nuts.   After the digestive system calms down (about three weeks) add in one food at a time to see if symptoms reappear.  It really helped me.  

Also, get your Vitamin D level checked.  Vitamin D helps reduce inflammation.  People with psoriasis have lower Vitamin D levels than people without.

Supplementing with a B Complex and extra Thiamine in the form Benfotiamine helps, too.  Several of the B vitamins (Thiamine, Niacin, Pyridoxine, Cobalamine) can cause peripheral neuropathy which can feel like itching.  Niacin will help Dermatitis Herpetiformis.  Thiamine deficiency can cause diarrhea and nausea.  Niacin deficiency can cause diarrhea and skin rashes.

Have you been checked for nutritional deficiencies?

Have you checked any medications for Gluten?  Gluten is frequently used as a filler in many medications.  Check soaps, shampoos, etc., and pet foods for gluten.

Have done the autommune diet. On D3 B12 and folate. Check all medications OK. Use free and clear soap shampoo ect . Clean with vinegar and baking soda. My cat has Graves so she is on gluten free foods.

Have peripheral neuropathy also.

@Dawn Meyers,

You would do much better if you took a B Complex that contains all Eight essential B vitamins.  Just taking B12 Cobalamine and Folate can cause a Pyridoxine B6 deficiency.  Pyridoxine deficiency causes Peripheral Neuropathy.  Pyridoxine is one of the vitamins that is notoriously low in celiac disease.  

Try Benfotiamine in addition to the B Complex.  Thiamine interacts with every single B vitamin.  

What kind of vinegar are you using? 

Plain white vinegar 

I was taking 2000 B12 is there amount you should take? 

B12 is only one of the B vitamins.  

You need all eight:

Thiamine B1, Riboflavin B 2, Niacin B3, Pantothetic Acid B5, Pyridoxine B6, Biotin B7, Folate B 9, Cobalamine B12

B Complex contains all EIGHT of the B vitamins.  

White vinegar is made from grain alcohol.  Try Apple Cider Vinegar instead.  It will clean just as well.

Thank you I will try anything at this point!!!