Good news, bad news - an update after my MRT test

takef586 · Post by **takef586** » Wed Apr 27, 2011 7:32 am

Hi,

I was diagnosed a year ago with LC. (After a colonoscopy and biopsies). My main symptoms have been abdominal pain and weight loss. My Enterolab results were inconclusive for gluten or casein, only some excess fat in the stool was found.I couldn't take entocort, so anyway all I had was a diet: Gf, CF, SF, YF. After 8 months there was no improvement, and I realized I also acquired faster heart pace, some arythmia and ringing in the ears. At a certain point, I thought it could have been Mastocytic Enterocolitis, but biopsy results and urine tests have excluded the hypothesis.

In a year and a half since my symptoms begun, I lost 20% of my body weight.

My GE said during the last visit, that the LC diagnosis was only a "hypothesis", and what I had was probably only IBS.
He prescribed me a low dose antidepressant (serotonine blocker) to relieve pain - which seems to work to some degree.

Every time I would do some tests, the results would come OK, so that would be the good news, but the bad news was that I still could not understand what was the reason of my illness.

Last week I went to Warsaw, and I got my MRT tests done. The results are quite interesting, I am highly reactive (red) to: wheat (gluten), corn, potato (both normal and sweet), crab, apricot, grapefruit, pepper, tumeric and polysorbate 80. I am reactive (yellow) to oats, soybean, yeast, milk, cottage cheese, whey, sugar, tapioca, lima bean, tuna, cabbage, broccoli,beet, lettuce, cayenne pepper, capsaicin, watermelon, cantaloupe, olive, blueberry and fd&c red #3.

I ate some bread an cottage cheese before the test to see my gluten and casein sensitivity.

The test has confirmed, that of the 4 foodstuffs famous for damaging the gut ( gluten, casein, soy, corn) I am sensitive to all of these, and I also have yeast sensitivity, as well as salicilate sensitivity ( apricots, grapefruits, olives) and nickel sensitivity (pepper, capsaicine, cayenne pepper).

I am in the proces of starting my elimination diet anew, with some problems linked to high fiber content of some of my least reactive foods, so it looks like it is going to be a slow process..

The LEAP dietician said, she was suspicious about the fact that I was still having all my symptoms and was losing weight even after eliminating gluten, casein and soy for several months. She suggested I should check for giardiasis. She has also recommended adding some flaxseed oil to the diet. She said, I was "cold" (cold hands), and that I had some symptoms of liver stress, and that I should take some liver detoxyfying herbs and digestive enzymes and probiotics...

All this looks to me like I should concentrate on holistic approaches to the problem - the dietician also suggested to look for a chinese medicine expert.

Has any of you had experiences with chinese medicine relative to your gut problems? Has it worked for anyone?

Thanks

Marek

Post by **tex** » Wed Apr 27, 2011 8:39 am

Hi Marek,

This is quite a mystery story, but as hard as you are working to find a solution, I have no doubt that you will eventually be successful in discovering the key to a solution. The weight loss and cold hands make me wonder about your thyroid hormone production and your HPA axis. Has your thyroid function and hypothalamic-pituitary-adrenal axis, (HPA or HTPA axis), been carefully checked out? It might be that you have a combination of LC, complicated by HPA dysregulation.

Tex

takef586 · Post by **takef586** » Wed Apr 27, 2011 9:18 am

I have had my thyroid function checked (blood test), and the results were normal...

mbeezie · Post by **mbeezie** » Wed Apr 27, 2011 10:26 am

Marek,

Don't be too quick to dismiss a mast cell problem. Test results can be normal and you could still have overactive mast cells. Have you tried the low histamine diet? I would use MRT and a low histamine diet and see what happens. Also, be sure that you examine everything you put in your mouth (lipstick, toothpast etc) is evaluated for potential reactive foods. One of our members was reactive to her lipstick and didn't realize it for quite a while.

Mary Beth

Zizzle · Post by **Zizzle** » Wed Apr 27, 2011 12:17 pm

Marek,
That's very interesting, and indeed, mysterious! Do you experience Raynaud's phenomena in your hands where they become very cold and almost blue from lack of circulation? It can be a symptom of other autoimmune issues. Have you had an autoimmune blood work-up to look at ANA levels and other autoantibodies?

I had no idea peppers were related to nickel? How can that be? I am very reactive to most bell peppers and cayenne, and I am also allergic to nickel (from jewelry, grommets on pants, etc). Mayo Clinic mentions the following about other sources of nickel exposure:

Nickel is also found in some foods, such as oatmeal, chocolate, nuts, beans and dried fruit. Nickel may also be found in canned foods. If you're allergic to nickel, ask your doctor if a low-nickel diet might be helpful.

I eat all of those except oatmeal!

I am making an appointment with a highly-regarded accupuncturist and chinese medicine doc who has an office in my building! I'm excited to be able to go downstairs during the workdays for my appointments. I have no idea what to expect, but I figured it wouldn't hurt to try.

Gabes-Apg · Post by **Gabes-Apg** » Wed Apr 27, 2011 1:02 pm

Marek
you asked a similar question in March this year, and i wrote my reply about acupuncture, naturopathy etc that i have been using before my MC diagnosis and since more so

here is the link (i think if i have done it correctly)

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

Joefnh · Post by **Joefnh** » Wed Apr 27, 2011 3:43 pm

Marek I am also in the process of writing up the results of Bio Impedance analysis BIA. I joust tried this while visiting with Gabes and was shocked at how consistent the results were to my MRT results.

I m working with Gabes to come up with a small list of BIA practitioners across the US and I guess we could also look near a few areas ion Europe as well.

Joe

takef586 · Post by **takef586** » Fri Apr 29, 2011 2:23 pm

Thanks for your help. My dietician thinks that what I have is a case of dysbiosis, never mind what has caused it. I am going to see my GE on Monday, and will ask him if checking on parassite infection or bacterial/yeast infection makes sense., given that these causes can create or aggravate dysbiosis.
Anyway, I guess there is not much more to check upon...
Meanwhile, I have found a very interesting analysis of the vicious cycle of leaky gut syndrome, and possible remedies - I am certain that I've had this problem for several years.

http://www.mdheal.org/leakygut.htm

BTW, during my MTR test, I,ve been told which is the fastest method to check if you have a leaky gut: eat some beet root, or drink some beet root juice, and look at the colour of your urine the next day. If it is red, you have leaky gut, because the big, strongly coloured cells of beet root do not normally pass the intestinal wall, and do not have to be eliminated from the blood by the kidneys.

Post by **tex** » Fri Apr 29, 2011 3:18 pm

Marek wrote:BTW, during my MTR test, I,ve been told which is the fastest method to check if you have a leaky gut: eat some beet root, or drink some beet root juice, and look at the colour of your urine the next day. If it is red, you have leaky gut, because the big, strongly coloured cells of beet root do not normally pass the intestinal wall, and do not have to be eliminated from the blood by the kidneys.

It may not be quite that simple:

The red colour of beetroot comes from pigments called betacyanins. These are acid/base indicators that are structurally unstable at extremes of pH, and have optical stability at pH 4 to 5. Red colour in urine, therefore, is dependent on urine pH. For the urine to be red, unchanged beetroot pigments have to be absorbed, and excreted.

During digestion beetroot pigments are subjected to changes in pH, especially the low pH in the stomach. At a pH of 2, found in the fasting stomach, the betacyanins are rapidly decomposed. Conditions where stomach pH is higher, and where there is rapid gastric emptying, would be more likely to cause coloured urine after eating beetroot.

All of which makes it unsurprising that all of us have beetroot pigments in our urine after eating beetroot. In most, though, the colour is too faint to see with the naked eye, though clearly present when investigated by chromatography in the laboratory. Older research indicated anything between 0% and 90% prevalence of red urine after eating beetroot.

What makes urine red depends. It depends on the type of beetroot, the way it is prepared, how much is eaten, what else is eaten, and other factors, like protective effects of oxalic acid. Those other factors may include use of drugs that raise gastric pH, especially histamine antagonists and proton pump inhibitors. There is at least one case-report of erythruria (red urine) after eating beetroot while on ranitidine [2].

http://www.medicine.ox.ac.uk/bandolier/ ... 124-7.html

I have no idea if this is correct or not, but it sounds logical.

It's pretty easy to tell if you have the leaky gut syndrome, because if you do, and you eat something you shouldn't, you'll have severe headaches, maybe migraines, arthritis-like joint pain, body aches and pains, maybe a stiff neck, etc. These symptoms are the result of peptides that will be absorbed into your bloodstream, and deposited into joints, and various organs, all over the body.

Tex

sarkin · Post by **sarkin** » Fri Apr 29, 2011 4:14 pm

That's interesting that it can be so readily destroyed by stomach acid pH - I wonder whether mine's too high? I certainly notice a rosy hue in stool from eating beets (my husband says he does, too). I don't think I've experienced the pigments showing up in urine, but I drink a fair amount of water and take B vitamins, which would make it harder to notice.

At least in my case, those characteristic pigments have made the whole gut transit without breaking down entirely. I wonder whether that might change with healing, now that I have removed so many food offenders. I have tasted beets since MC but not had anything like a normal portion.

Fascinating. I'm going to assume (for now) stomach pH is not something I need to worry about in and of itself - more something that needs to be factored in to get all the way to healthy.

Marek, I hope you're feeling better. Several here have benefitted from acupuncture from knowledgeable practitioners. Be careful about adding Chinese medicines that are blended from multiple herbs and ingredients. I have always been a big fan of supplements and herbs but am taking a super-careful approach now. I have had both positive and negative experiences with Chinese medicine herbal preparations in the past, and good experience with acupuncture (but that was before MC).

Sara

takef586 · Post by **takef586** » Sun May 08, 2011 9:59 am

This comment on beetroot is interesting, however my urine was dark red. Also, according to the schematic explanation of the mechanism which causes food sensitivities, provided by the LEAP organization, leaky gut is usually the precondition for these to occur. I am fairly certain I have leaky gut, because of numerous sensitivities, long time exposure to stress, regular wine consumption (in the past). According to what they report, some degree of intestinal permeability is common in up to 50% of the americans...

Meantime, I have tried to follow my MRT diet scheme, but I got problems with mango and honey, which have prompted me to consider the FODMAP issue. I have combined the MRT , FODMAP and low fiber foods, and I have noticed some improvement, especially on the bloating front. According to available research, and as Tex was long saying, fructose digestion is often impaired during gut inflammation.

My GE during the last visit suggested to seek hypnotheraphy aid, as it seems to be (alongside the diet) the most effective way to control abdominal pain in IBS. In fact, some doctors claim, that since IBS is not a disease AT ALL, once you remove the pain, you remove IBS.

I still am not entirely convinced that IBS only can explain my 20% weight loss, or my biopsy diagnosed 29% level of lymphocytes in the gut, or my 40% faster heart rate, but it would be nice to believe, that I have no disease AT ALL, haha...

Will keep you posted on my proggress.

Thanks for help

Marek

sarkin · Post by **sarkin** » Sun May 08, 2011 6:05 pm

Marek,

You raise several interesting points - I can tell you, my pain is (thankfully) gone, but I still clearly do not have the ability to eat many things (still working on my list), and I rarely have 'normal' BMs. I hope your pain can be resolved soon - it really does help with the other symptoms, not to be in immediate pain.

It sounds as though you are looking in the right direction. Mary Beth, a member of this board who is also a dietician, may have some suggestions about the MRT/FODMAP combining. She helped me to realize I need to consider histamines in food (I believe especially at this time of year, when pollen allergies here are very fierce). I am now using a supplement called Histame, when I eat foods from this list especially: http://www.urticaria.thunderworksinc.co ... tamine.htm - and I believe it is helping. I also take it when I eat in a 'risky' way (any restaurant, a friend's house, or when I am trying something at home that I have not eaten in a while, and am not sure will be OK) - though it will not help with gluten, or dairy, or any true allergy. I also have it when I have a glass of wine. One of our members takes one capsule of Histame every meal, and two if she has fish. (I got mine at iherb.com - they do ship internationally.)

I believe I also have leaky gut. I ate something from a restaurant that did not agree with me (I suspect it had gluten or dairy, though they said it did not)... when I got sick from it, my urine smelled like the fennel seeds that had flavored the dish. So it makes sense to me that when the gut is permeable, various chemicals can escape relatively unchanged... and it may vary from person to person, as well as food to food.

I am glad to hear you notice improvement regarding bloating. I believe that was a significant 'warning sign' to me that I did not understand, before I became so sick that I realized I had a serious problem on my hands.

I have only had that heart-rate increase a few times - does that happen for you only shortly after eating something, or is it all the time. It's quite disconcerting.

Best,

Sara

Post by **tex** » Sun May 08, 2011 6:48 pm

Speaking of heart rate increases, I never realized that I might be sensitive to food coloring, (because I never noticed any symptoms), until one day my brother mentioned that one of his daughters was allergic to yellow no. 5. I asked what her symptoms were, and one of them was a heart rate increase. Hmmmmm. So, just to check that out, I drank a bottle of Gatorade that contained yellow no. 5, and sure enough, when I checked my heart rate about 10 minutes later, it was much higher.

Tex

sarkin · Post by **sarkin** » Sun May 08, 2011 7:18 pm

LOL, Tex - you are truly a man of science to take on that experiment! (If I'm going to brave mystery symptoms, I think I'd do it for an ingredient of more flavorful significance... like chocolate - but you already know that about me.) Interesting that that particular food intolerance runs in your family. (My brother & 2 of his 3 kids will be meeting us in Paris (they come from Sweden) - I'm just hoping I can stay calm about my own food and not try to talk everyone I share a few genes with out of their croissants - I think I will manage.)

I have not had that sudden heart-race in some weeks now. I cannot tell from my (then primitive) notes whether that is because I haven't eaten the problem food? Or maybe, as I am gradually beginning to heal, I am a little less easily triggered?

Seriously - there must be many, many people innocently experiencing mystery 'side effects' and having a heck of a time connecting it to what they're eating - if the diet connection even crosses their minds!

How did your brother & family figure out that it was Yellow #5 that caused your niece's reaction?

Love,
Sara

Post by **tex** » Sun May 08, 2011 8:14 pm

Sara wrote:How did your brother & family figure out that it was Yellow #5 that caused your niece's reaction?

She had been having much more noticeable symptoms, including asthma, and so her pediatrician had suggested that food dyes might be contributing to her symptoms, so they started reading labels and watching for a reaction. Actually, out of 3 daughters, 2 of them had the problem. One of them later developed gluten-sensitivity. (The jury is still out on the other one. LOL).

Love,
Tex