Anyone Know what could be wrong with me?

VintageNick · Post by **VintageNick** » Wed Dec 23, 2015 5:22 pm

I'm completely unable to eat food of any kind, I live on Vivonex it's a elemental formula. If i try to eat any food I get an immediate histamine reaction in my face. Food causes my insides tremendous pain and i end up going to the bathroom non stop. It also causes facial puffiness/inflmation The more my insides hurt the worst my face feels, i will get a histamine type reaction in my face if i chew on a paper towel depending on messed up my intestines are. When i was eating i was living on anti-histamines it claimed my insides down and calmed my face swelling down but all food was still coming out undigested and i was only able to eat a few foods. I know 85% of whats wrong with me now started after moving into an apt that i later found out had a lot of mold in it. Before I moved into this apt and looking back i never had a good gut, took a lot of antibiotics as a teen and took a lot of PPI's and Motrin as an adult.

We had to get rid of everything we owned thats how bad the mold was, but i don't understand whats wrong me. The only way I've been able to calm my body down is taking about 40grams of L-glutamine a day, quercetin, cholestyramine, and activated charcoal. With activated charcoal and cholestyramine being the most important. I'm intolrenet to almost all meds and supplements if i even take a pill with a wrong binder in it such as corn stratch my stomach will cramp face will hurt. I'm also completely hypersensitive to mold and enviroments if i go into a thrift store i will immediately get sick.

The part that kills me is the facial feelings i feel something in my face almost everyday cause my gut is hurting almost everyday.

Also i was getting sick for a peroid of time and i was kind of brushing it off, i was dealing with constipation for quite a while, went to the doctor brought up the mold etc told me to eat fiber and take senna over a 4 week period i ate bags and bags of raw veggies and tooks senna. Around the 4 week mark I had a horrible diarrhea attack and have never been the same since, I can't leave the house I get fatigue very easy. Thats when i lost the ability to eat food.

The reason i bring this up on a MC forum is if i use an enema it will hurt and will cause my face to feel puffy and hurt.

They tested me for everything
Negative for all food allergies and environmental allergies.
Negative Celieac
Negative Colonoscopy and Upper GI
Negative for SIBO
Negative for Motility problems
Negative for MCAS
Negative Thyroid
Negative on all blood work markers for inflammation etc...

I've yet to run into someone online quite like me that feels something in there face almost everyday, I've heard about people worse then me with dierrah and never getting facial swelling.
It's like even having my own stool inside me causes inflammation and facial puffiness without even eating food.

Please if anyone out there might know whats wrong could possibly help thank you im on the edge of ending it been sick for to long without answers.

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 23, 2015 5:43 pm

welcome to the group
sorry that you are having such intense reactions..

There is an active member who has similar issues, zizzle, she is holidaying at the moment so may not see your post for a week or two.

I would suggest you read the section on 'Mast Cells'
http://www.perskyfarms.com/phpBB2/viewforum.php?f=74

In relation to your tests - here is some feedback/comments that apply to MC issues;

Negative for all food allergies and environmental allergies. - what testing did you have done? blood, skin, poop?

Negative Celieac - Most people here test negative to celieac blood test - but have major gut and inflammation reactions to wheat/gluten and many grains related to wheat

Negative Colonoscopy and Upper GI - when you say negative - did they take biopsies and do the pathology on the biopsies for MC? and or Staining for Mast Cells

Negative for SIBO
Negative for Motility problems
Negative for MCAS
Negative Thyroid - the normal TSH blood test may be 'negative' but many people here when they do the additional tests confirm thyroid issues

Negative on all blood work markers for inflammation etc... Majority of people here do not have positive inflammation in blood work whilst having a major flare. it is one of the issues that makes diagnosing MC difficult

you have not mentioned Vit D3 - have you had this level checked? do you take Vit D3?

Read the posts aimed at new people, there may be some information that will help you.. and feel free to ask questions based on your reading and research here...

VintageNick · Post by **VintageNick** » Wed Dec 23, 2015 5:56 pm

Thank you for responding.

When i was eating food still and i cut out gluten i noticed a huge difference in inflammation so im definitely sensitive to it.
I did blood and skin testing and was negative to all. No poop testing.
I would have to look at the records but I think they did stains for mast cells and biopsies for MC. I mentioned both of these to the GI doctor.

"Negative on all blood work markers for inflammation etc... Majority of people here do not have positive inflammation in blood work whilst having a major flare. it is one of the issues that makes diagnosing MC difficult"

Did not know this.

My wife takes me to the tanning booth 3 times a week and it's brought my Vitamin D levels to a 44 it was low before that I notice that i feel better tanning.

Thank you for the response I just can't take being like this anymore especially without a diagnosis.

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 23, 2015 6:07 pm

Re the Vit D3 - 44 is still low for someone with ongoing inflammation/gut issues.

Check your pathology report, we have had instances where the GI specialist/Doctor was not able to interpret/understand the reports

Regarding the blood and skin allergy testing: this discussion and link to article a few posts in may help to understand why Blood/skin tests may not be the most reliable.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21227

the members that had chronic mast cell issues had a tough road getting diagnosis...

VintageNick · Post by **VintageNick** » Wed Dec 23, 2015 7:56 pm

Surgical Pathology Report
FINAL PATHOLOGIC DIAGNOSIS
COLON, RANDOM BIOPSIES
-- COLONIC MUCOSA, NO DIAGNOSTIC ALTERATION.
-- NO EVIDENCE OF LYMPHOCYTIC/MICROSCOPIC COLITIS.
-- GIEMSA STAIN NEGATIVE FOR SIGNIFICANT MAST CELL POPULATION

Microscopic Description Microscopic examination was
performed and supports the above diagnoses.

Clinical History 34 yr old male with chronic diarrhea.
Pt requested checking for mastocytosis.

PROCEDURE / SITE: Bottle 1 Bottle 1: Lower GI Lower GI Locations:
(random colon bx's/ ORM/CL @1616)

Number of Containers->1 Collection date: 6/17/14 Collection time: 16:16

Labeled "Random colon Bx's" and received in formalin are eight light tan soft
and irregular fragments of tissue measuring 0.9 x 0.5 x 0.3 cm in aggregate.
The specimen is inked GREEN, filtered and entirely submitted in one cassette. (8-0)

This is what i got from my last colonoscopy but i know for a fact i have some thing going on in the colon because if i do an enema it will irritate it
and i will actually feel inflammation in my face just from messing with my colon.

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 23, 2015 8:15 pm

Tex is a better expert at this stuff - so hopefully he will provide his insight
Its a shame they didnt include the actual mast cell number -

Did you read the info about Mast Cells
found this link as well http://www.mastcellaware.com/mast-cells ... cells.html

Tex: What is the member name for the lady who had Mast Cell diagnosis confirmed? i was trying to find her posts/discussions etc

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 23, 2015 8:26 pm

I have been searching our archives for previous discussions that may be of benefit to you;

This one has good explanations and links to articles
http://www.perskyfarms.com/phpBB2/viewt ... erocolitis

http://www.perskyfarms.com/phpBB2/viewt ... erocolitis
http://www.perskyfarms.com/phpBB2/viewt ... erocolitis
http://www.perskyfarms.com/phpBB2/viewt ... erocolitis
http://www.perskyfarms.com/phpBB2/viewt ... erocolitis

this one is very informative
http://www.perskyfarms.com/phpBB2/viewt ... erocolitis

hope this helps

Post by **tex** » Wed Dec 23, 2015 8:47 pm

Hi Nick,

Welcome to the discussion board. I note that your pathology report makes no mention of ruling out collagenous colitis by checking for increased thickness of collagen bands in the lamina propria of the biopsy samples. The pathologist only ruled out lymphocytic colitis and mastocytic enterocolitis. I can't help but wonder why the pathologist didn't bother to even try to rule out collagenous colitis.

But based on your description of your symptoms, it's certainly possible that your main problem may be a syndrome known as Toxicant-Induced Loss of Tolerance (TILT). Probably many/most GI specialists have never even heard of it, because it's a rare condition. Here are a couple of links to articles about individuals who have the condition. In the article at the second link, the doctors apparently don't even realize that the patient in the article has TILT. But based on his symptoms, I would say that TILT is almost certainly the problem.

http://discovermagazine.com/2013/nov/13-allergic-life

http://www.dailymail.co.uk/news/article ... thing.html

Again, welcome aboard, and I hope that some of this is helpful,

Tex

P. S. Gabes, I can't recall who you are thinking of, with an ME diagnosis.

VintageNick · Post by **VintageNick** » Wed Dec 23, 2015 9:11 pm

Thank you for all the responses any information is helpful. I took a lot of antibiotics as a teen and looking back was never right since then. Then around 2007 Started taking pain killers after a car accident I noticed a couple years after taking them looking back i was getting some kind of intestinal inflammation. But it was 2010 after moving into this apt with mold is when everything went down hill it's when i started suffering from severe inflammation, puffy face, hypersensitive to mold, vertigo etc... Ironically i was dealing with constipation up until 2013 when the doctor told me to eat fiber and take senna. That 3 - 4 week period of senna and raw veggies destroyed and I've never been the same since. I know a lot of what im dealing with is a Histamine/mast cell issue. And then the other part is painful intestines with a painful colon (i can tell it's colon from doing enemas and having that colon pain).

Prior to the senna/raw veggie incident i ate food even thou i was having lots of issues. I'm in the middle of trying to get another colonoscopy from a better GI doctor, the first one was through kaiser.

VintageNick · Post by **VintageNick** » Thu Dec 24, 2015 9:13 am

Thx for the links also, i've actually seen that kid in the story. But i believe hes different then me or that tilt, there is a video on him and he was having issues as a baby. He also is allergic to everything via the skin prick testing etc... To this day I've been negative for everything...

Also there was a pin point incident that turned me from functional to not. That 3 - 4 week period eating raw veggies and taking senna hurt my insides bad. It's when i also noticed how dramatic i was reacting inside my apt compared to when i was outside.

Also to note I was diagnosed with Pelvic Floor Dysfunction my muscles are to tight.

BearcatRx · Post by **BearcatRx** » Thu Dec 24, 2015 1:50 pm

Do you have any more information on how many biopsies they took and where they were taken? I seem to recall certain people only having one or two biopsy locations done and that could in fact lead to no evidence, however the correct area was not biopsied.

Gabes-Apg · Post by **Gabes-Apg** » Thu Dec 24, 2015 2:05 pm

Bearcat
the text that Nick provided said 8 samples.

Labeled "Random colon Bx's" and received in formalin are eight light tan soft
and irregular fragments of tissue measuring 0.9 x 0.5 x 0.3 cm in aggregate.
The specimen is inked GREEN, filtered and entirely submitted in one cassette. (8-0)

in line with Tex's comment, we are curious if they tested for collagenous colitis

Nick
agreed, the onset of your issues is linked to distinct events (very similar to many many people here)

VintageNick · Post by **VintageNick** » Thu Dec 24, 2015 4:40 pm

Yea, I've never had a good gut, but 90% of this started after moving into an apt with mold and the rest happened after the raw veggies and senna when i became disabled.
I'm going to try to get a 2nd colonoscopy i had kaiser at the time.