Histamine Intolerance

brinyskysail · Post by **brinyskysail** » Sat Jan 22, 2011 5:38 pm

Hi,

I just found out that I have histamine intolerance (HIT). I've seen it mentioned a couple times throughout the forum. There is so little information about it that I'm having trouble figuring out what I can safely eat. Does anyone know if sorghum flour is high-histamine? thanks!

JLH · Post by **JLH** » Sat Jan 22, 2011 6:57 pm

I can't really help you but I'm sure Tex and Mary Beth can........

Post by **tex** » Sat Jan 22, 2011 7:36 pm

Hi,

Welcome to the group. If you are truly intolerant of histamines, then you not only would have to avoid foods that contain histamine, but also foods that cause the body to produce histamine. Foods that are high in oxalates, cause the body to produce histamines, and I believe that sorghum flour is relatively high in oxalates.

Are you truly histamine intolerant, or do you mean that you have a higher than normal mast cell level, (Mastocytic Enterocolitis) or issues with inappropriate mast cell degranulation, either of which can cause elevated histamine levels in your body? One thing that may help, is to make sure that you are getting adequate amounts of vitamin B-6, in order to help eliminate oxalates from the body.

Tex

brinyskysail · Post by **brinyskysail** » Sat Jan 22, 2011 7:45 pm

Thanks for your replies.

It's not mastocytic enterocolitis. I haven't actually been diagnosed with HIT (it seems no doctors in the U.S. have ever even heard of it), but I have had debilitating health problems for several years, and after only a couple days of eliminating high-histamine foods and histamine-releasing foods I have had AMAZING improvement. I also have fructose malabsorbtion, and doctors haven't heard of that either; it's frustrating trying find info/help.

Thanks again :)

brinyskysail · Post by **brinyskysail** » Sat Jan 22, 2011 7:48 pm

I should rephrase my last post. I DON'T THINK that it's mastocytic enterocolitis. I have had a colonoscopy with biopsy, and, since mastocytic enterocolitis is more well known, I would think that it would have been checked for. That involves inflammation, doesn't it? No inflammation was found.

mbeezie · Post by **mbeezie** » Sat Jan 22, 2011 9:37 pm

Hi,

I have a mast cell disorder (hstamine comes from mast cells). I am curious to know what your doctor thinks is causing histamine intolerance? What are your symptoms?

Here is an article that you might find helpful. http://www.ajcn.org/content/85/5/1185.full.pdf+html

And here is a link to a low histamine diet. http://www.urticaria.thunderworksinc.co ... tamine.htm

There is a product called Histame that some use for histamine intolerance. I haven't used it but have heard that it can be helpful. http://histame.com/

How is your doctor treating this? With antihistamines or mast cell stabilizers?

Mary Beth

brinyskysail · Post by **brinyskysail** » Sat Jan 22, 2011 9:55 pm

Thanks! I already ordered Histame a few days ago, but it hasn't arrived yet. I don't know of any doctors who know about HIT. I found out about it on my own and began the low-histamine diet. I've spent the past 4 years pointlessly going to doctor after doctor who has no idea what's wrong with me. Cutting out histamine has definitely made a major difference, though.

As for my symptoms I could write a book about that, but I'll go for the short list:
There are only a couple foods I can safely eat
gas/bloating (this is completely gone since beginning the HIT diet - yea!)
abdominal pain (this is gone too)
nausea
fatigue
hypochlorhydria
severe constipation (I haven't had a normal bowel movement in about 3 years. I have no choice but to use a high enema)
weight loss (I'm 5'4" was down to 75lbs. I currently weigh 90, but started at 110)
fructose malabsorption
adrenal fatigue

Are you aware of any doctors who are familiar with Histamine Intolerance?

brinyskysail · Post by **brinyskysail** » Sat Jan 22, 2011 10:12 pm

i didn't mention the itching or swelling; those are important symptoms for HIT, but compared to the other symptoms, they don't bother me as much. My entire body gets itchy. Sometimes my hands and feet swell, and it can be pretty painful. The last time it happened (which is what caused me to find out about HIT) my hands swelled so much that I couldn't close my hands into fists.

ant · Post by **ant** » Sat Jan 22, 2011 11:01 pm

Just read the food restrictions on the HIT diet. It is pretty tough! I hope you are not also gluten and or dairy intolerant.

Best wishes for lasting improvement (and finding a knowledgeable Doc), ant

Post by **tex** » Sat Jan 22, 2011 11:39 pm

Most GI docs never check for mastocytic enterocolitis, (hell, most have never even heard of it). In order for mast cells to be visible in the slides, under the microscope, a special stain is required, that most pathologists/hospitals don't even keep in stock, so it has to be specially ordered beforehand. The good news is that if the stain is obtained, the existing slides can be re-stained, and re-examined, to check for mastocytic enterocolitis, (thus saving the trouble and expense of having to go through another colonoscpy). In your case, (IOW, with your symptoms), that would be extremely advisable, IMO.

Incidentally, Mary Beth is a licensed dietitian, and she knows her stuff.

Tex

mbeezie · Post by **mbeezie** » Sun Jan 23, 2011 7:13 am

Finding a doctor is not an easy task, but they are out there. An allergist might be familiar with histamine issues. I saw a mast cell specialist/allergist in Boston and now will be followed by an allergist in Austin. You need to get to the source if the problem. Here is another article you may find interesting http://xa.yimg.com/kq/groups/13206694/1 ... ec2010.pdf

Have you tried antihistamines for the itching. I have had bouts of itchiness and Claritin helps.

Mary Beth

brinyskysail · Post by **brinyskysail** » Sun Jan 23, 2011 8:34 am

Thanks again

ant: I pretty much can't eat anything

tex: I'll definitely start researching mastocytic enterocolitis; I really don't know anything about it
mary beth: Thanks for the article. I had previously read the ones you posted about HIT, but I have never seen this one before. And, yes, I do need to get to the source of the problem - I've been sick for years, have had to leave college, can't have a job, I just want my life back! Through searching for the source of the problem, I've come to realize how many people are in the same boat (have similar symptoms and are getting no help). It's sad to think that even one other person has to go through this, but in reality it's like an epidemic. I hope doctors start acknowledging these problems soon. Every time I go to a doctors, they just think that I'm anorexic because of my weight and refuse to even help me

I have only tried taking Benedryl, and it completely knocked me out; I slept all day. I may have to just start trying different antihistamines to see what works. In high school I took Zyrtec for awhile and didn't seem to have any side effects.

mbeezie · Post by **mbeezie** » Sun Jan 23, 2011 9:39 am

Here's one more you might find helpful

http://www.allergynutrition.com/resourc ... 20(33).pdf

Mary Beth

Post by **tex** » Sun Jan 23, 2011 9:40 am

Here's some general introductory information on ME for a place to start, and there are a few other links there that might be of interest.

http://thefooddoc.blogspot.com/2008/02/ ... demic.html

Tex

brinyskysail · Post by **brinyskysail** » Sun Jan 23, 2011 10:01 am

Thanks again SO much for your help

I'll take any info I can get my hands on, especially since it's in such limited supply