New with question about mast cells and LC

Dee · Post by **Dee** » Wed Apr 01, 2009 3:13 pm

So Many Conflicting Requirements!!! Hmmmmm.......
Low Salt/ Histamine Diet

Meats 5 to 8 oz. Portions : Lunch & Dinner Meat Times/ week Notes:
Beef 3 As lean as possible (avoid burgers)
Pork 4 Contains: Tyrosine
Chicken 3 No breading allowed (avoid fried)
Turkey 4 Contains: Tryptophan

Fruit: 5 Times per Day
Apples
Aprocots
Blueberries
Blackberries
Cantaloupe
Coconut
Dates
Figs
Honeydew
Kiwi
Mangos
Nectarines
Papaya
Peaches
Pears
Plums
Prunes
Raspberries
Watermelon

Vegatables: Two 8 oz. Cups per Day
Alfalfa Sprouts
Artichoke
Asparagus
Avocado
Beets
Broccoli
Carrots
Cauliflower
Chickpeas
Cucumber
Kidney Beans
Lettuce (Boston)
Lettuce (Chickory) Lettuce (Iceberg) Lettuce (Romaine) Lentils
Leeks
Lima Beans
Mushrooms
Onions
Potatoes
Radishes
Scallions
Sweet Potato
String Beans
Squash Zucchini

Grains (Choose One Only per Day)( Of Course We Can't Have This)
Pumpernickel Rye Bread

Eggs: Two per Day

Nuts & Seeds (Essential to Lower Cholesterol)
One Cup of each per Week
Cashews Non-Salted, Raw or Roasted.
Walnuts Non-Salted.

Condiments: Paul Newman's Dressing
Sesame Oil
Mayonnaise (Regular)
Mustard
Corn Oil
Fructose
Pepper
Olive Oil
Honey

Nectarines All Spices (No Salt)
Canola Oil Oil & Vinegar Margarine

Beverages: Beverage Quantity Notes
Water (8) 8 oz. Glasses per Day Minimum
Decaff Coffee/ Tea As Desired Splash of milk only allowed.
Fruit Juices As Desired From list of fruits above only. Juice does not count as a fruit serving.
Seltzers As Desired Non-Salted. Fructose base only.
Soda Up to 2 Cans per Day Nutrisweet or Fructose Only

Notes: No milk products allowed.
No sugar allowed until histamine level is sufficiently low.
No wheat products allowed.
No tomato based products allowed.
Avoid anything preserved with Sulfur Dioxide.
Eat only what is shown on this diet, no exceptions.
Avoid MSG.
Meat protein is only metabolized when carbohydrates are also eaten.
If you ate 5 pounds of meat per day and no carbohydrates, you would probably starve to death. The limited carbohydates in this diet allow for the large consumption of meat.

Dee · Post by **Dee** » Wed Apr 01, 2009 3:18 pm

Surrey Allergy Clinic
http://www.allergy-clinic.co.uk/food_al ... octors.htm

Post by **tex** » Wed Apr 01, 2009 9:16 pm

Meat protein is only metabolized when carbohydrates are also eaten.
If you ate 5 pounds of meat per day and no carbohydrates, you would probably starve to death.

Those statements are incorrect. Animal fat can take the place of carbohydrates:

http://www.biblelife.org/stefansson2.htm

IOW, you have to eat fatty meat, not lean meat. Eating nothing but lean meat will cause a condition known as "rabbit starvation".

Tex

faithberry · Post by **faithberry** » Thu Apr 02, 2009 5:47 am

Got my serum tryptase test results!!!!!!!

Mine is 21.5
Normal is less than 13.5

Anything over 20 is definitely considered a possible marker for mastocytosis, and I know some with the disease that have lower levels. That doesn't necessarily mean I have mastocytosis, but it means I'm probably shooting in the right direction when I'm considering mast cells as a factor in my allergy-type reactions and chemical sensitivity. My IgE is super low, so it's certainly not that.

My thyroid is a bit wacko too, low free T4 and TSH a little elevated. I've had to stop taking my vitamins for thyroid support since I've had more significant tummy trouble that last few months.

That's an interesting diet, Dee. I'll check it out later, but try not to offer too much helpful advice, which is not always so helpful!!!!!

Lots of love,

Post by **tex** » Thu Apr 02, 2009 10:22 am

Faith,

It appears that you're on the right track, all right.

Are you currently taking a thyroid hormone supplement? A very high percentage of the members of this board, (about 8 times the rate of the general population), have thyroid issues.

Tex

faithberry · Post by **faithberry** » Thu Apr 02, 2009 11:44 am

Tex,

My thyroid was normal when it was tested in the last year though low normal. My T3 was a little below normal. I was taking L-Tyrosine to help the T4 and Selenium to help the T3. But I've had to stop since my tummy became so sensitive.

This is the first time the T4 has been below normal and the TSH slightly elevated. Darn! So no, I'm not taking thyroid hormones at present. Will be discussing this with my doctor at the end of the month. I was really hoping to save my thyroid, but with all the stress on my adrenals from the allergy-like reactions, it can't be helping my thyroid.

My C-reactive protein is also elevated to 8 and it was 1 last June! Every time I turn around my lab values are different! The good ones go bad; the bad ones go good! It's amazing. I have some calcium oxalate crystals in my urine and a few epithelium cells, so this might be why.

I've been eating a lot of millet which is very high in oxalates. Like Dee, I'm overjoyed at another possible food intolerance!!!! Yeah, bring em on!!!!! Oh and you will love this, the website I looked at suggests anti-histamines as one treatment (along with various supplement) because....oxalates may cause histamine release!!!!! No wonder why there's hardly anything left to eat.
That's www.lowoxalate.info

This is one of the dangers of eating such a restricted diet. Bye, bye millet. I'm going to have to hunker down and figure out a Zantac solution so I can really try to Gastrcrom or try the Ketotifen.

faithberry · Post by **faithberry** » Thu Apr 02, 2009 12:05 pm

Dee,

Good detective work! Always helpful to find another diet.

I couldn't find where on the Surrey Clinic this low histamine diet is listed. I wanted to see if they provide any other information. There are quite a few histamine liberators on that diet. I myself trust the ICUS diet and the Histame information much more just from my own experience of problem foods. They even include pork which they list as a histamine liberator on another page.

I think I'll crawl in the corner and suck my thumb, about the only food-like thing I can tolerate it seems!

faithberry · Post by **faithberry** » Fri Apr 03, 2009 5:44 am

I was bummed out when I found out about the possible oxalate issue. Then I woke up this morning and realized it's a huge missing piece in my puzzle, so it's so helpful to know about this. Of course, I still need to see what the doctor says. It may not be so significant.

It clicked that in certain circumstances oxalates *MAY* also cause the release of histamine, in particular when they come into contact with damaged tissue, causing pain and burning sensations. I have a lot of damaged tissue and these are the kind of symptoms I get from foods. I don't think I have kidney stones or a serious disease, but these little crystals in the urine are a good warning sign.

Also one can be absorbing too many oxalates through the gut (via leaky gut I suppose). This might apply to a few other MC folks and could be another factor in our gut problems. Apparently, oxalates have a laxative effect according to one piece I read...hmmmm. If so, not too great when you have D.

I just starting reading about this, so I don't know how reliable any of this information is yet, but there are a number of good websites out there.

www.lowoxalate.info/index.html

www.ohf.org/diet.html
(The Oxalosis and Hyperoxaluria Foundation)

The neat thing is that it gives me some ideas of a few more vegies I can eat. and it explains why I can eat things like asparagus and bok choy.

I've decided to go for it and start taking Zantac again so I can do a real trial of the Gastrocrom. Like Tex says, not everyone reacts to Zantac, this is based on a few case studies as far as I can tell. If Ketotifen is good for calming the inflammatory response, Gastrocrom will do the same.

Post by **tex** » Fri Apr 03, 2009 8:28 am

Faith,

We have discussed oxalates in the past. You might be interested in some of these past discussions:

http://www.perskyfarms.com/phpBB2/viewt ... ht=oxalate

http://www.perskyfarms.com/phpBB2/viewt ... ht=oxalate

http://www.perskyfarms.com/phpBB2/viewt ... t=oxalates

Regarding the risk of kidney stones, here's a quote from one of my old posts:

Taking excessive amounts of calcium supplements is not without risk. Probably the most well known risk is an increased risk of developing kidney stones, which are commonly formed from calcium oxalate crystals. However, note that studies have found that increased intake of calcium from food, actually reduces the risk of kidney stones, (while calcium supplements appear to increase the risk).

That comes from this topic:

http://www.perskyfarms.com/phpBB2/viewt ... ht=oxalate

I notice that I didn't cite a reference. I have no idea if that is because I was in a hurry that day, or that information is considered to be common knowledge.

Tex

faithberry · Post by **faithberry** » Sun Apr 05, 2009 12:16 pm

Thanks for the links, Tex. I see you've been down this road before. I am very intrigued by the connection with the immune system and poor fat absorption...

Oxalate is a highly reactive molecule that is abundant in many plant foods, but in human cells, when it is present in high amounts, it can lead to oxidative damage, depletion of glutathione, the igniting of the immune system's inflammatory cascade, and the formation of crystals which seem to be associated with pain and prolonged injury. Ordinarily, not much oxalate is absorbed from the diet, but the level of absorption has to do with the condition of the gut. There is a lot of medical literature showing that when the gut is inflamed, when there is poor fat digestion (steatorrhea), when there is a leaky gut, or when there is prolonged diarrhea or constipation, excess oxalate from foods that are eaten can be absorbed from the GI tract and become a risk to other cells in the body.

Given the sudden change in my thyroid levels, looks like another possible connection:

The thyroid is the key organ of the body other than the kidney which is known to collect oxalates, resulting in compromised function.

www.lowoxalate.info/research.html

I didn't realize oxalates are prevalent in so many foods.

cludwig · Post by **cludwig** » Sun Apr 05, 2009 6:27 pm

Hi Tex,

No, I am not doing well at all. I have really no clue as to what is causing me so much pain. I think I told you last fall I tested positive for whipworm and strongyloides. I spent a couple of months on meds to get rid of them. I have probably had them for a couple of decades and I am sure that it was the srongyloides is what destroyed my gallbladder as some of the larger hospitals test the removed gallbladders for this and giuardia. After my treatment, I no longer have diarrhea but I have massive cramping and pain in my stomach and intestines....the snakes as you called them. I also started passing a lot of mucous. I have tried every food elimination diet I can think of...am thinking it is a family of foods that must be getting me. Have eliminated fructose which helped for a while...but substituted in pumpkin and walnuts. This didn't agree and I notice those are on the histamine list. So, I am really frustrated and afraid to eat anything. I did get my strength back after taking the meds for the worms...no more chronic fatigue...but this pain is relentless. I know this sounds like IBS...but everything I read says that that pain is helped by having a BM and my problem begins with the BM. I am fine ...zero pain until I have a BM. While I am still on the toilet I will start burping. Then I continue to bloat and burp all day. On the days that I don't have a BM, I have no pain ,bloat or burping. It feels like my intestines just get stuck in reverse motility. Have you ever heard such a thing? Maybe this is just a severe IBS thing. I just can't get my intestines to heal.

Sorry to unload on you. You were so kind to ask how I was doing. I wish I had better news to share with you. Thanks for listening.

Love,
Cristi

Post by **tex** » Sun Apr 05, 2009 11:11 pm

Cristi,

I'm very sorry to hear that you're having so much pain. Did you have followup testing to be sure that the treatment actually completely rid your body of the strongyloides? They can be very difficult to detect at times, and the burning pain that you describe, is characteristic of an infection of that type. One thing to remember, is the fact that if you had been taking a corticosteroid, prior to the time when you received the treatment for the strongyloides, the suppression of your immune system could have resulted in a hyperinfective condition, which could have made them extremely difficult to eradicate. A retest might be in order.

Of course, as you mentioned, until we can complete the healing process, all sorts of symptoms are possible, due to various complications, and when the right conditions are present, it seems that everything causes us to react. You're right, though - it's very unusual for that kind of reaction to be triggered by BMs. I'm very puzzled by that. I hope you can find the key that will get you out of that cycle.

Love,
Tex

cludwig · Post by **cludwig** » Mon Apr 06, 2009 11:58 am

Hi Tex,

I am waiting on the results....took the re-test last week. I was on entocort two different times after my surgery, so I am sure that made things worse for me. However, the whipworm was kind of a "blessing" in that it competed with the strongyloides. I didn't get symptoms of the strongyloides until after I was rid of the whipworm. Then I started having a cough and itchy feelings in my lungs. I also always had a lump in my throat which I thought was thyroid issue. Found out later that the stongyloides hatches in the lungs and crawls up the throat were you swallow it down to the intestines. Does it get any grosser than that? I am not having any of those symptoms now...so the re-test should be interesting. It does make me wonder about all those cysts the Mayo found on my pancreas, liver, and kidneys on the CT scan. When I had a follow up endoscopic ultrasound to get a biopsy of the cyst it was gone. Could the cysts have been parasites? Will never know.

I had surgery last week for a fistula from the large intestine. I have never had a fever so I wonder if other parts could have infection.

I wonder if your diet approach is the best way to go. If I recall correctly you ate a really restricted diet for quite a while. Maybe fructose, fructans, histamine foods and oxylates bother us all until we get some healing accomplished. I am so frustrated because I have been so good about my diet for 3 1/2 years with minimal relief. My brain is telling me my actual start date with the healing began in January this year after I finished the parasite meds. But, emotionally it feels like a long time without much success.

My reaction to BMs is really strange. I always blamed it on the diarrhea, but I am still experiencing it with normal BMs. I just don't know.

Will let you know my re-test results. Thanks much, Tex.

Love,
Cristi

Post by **tex** » Mon Apr 06, 2009 1:25 pm

Cristi,

You could be right about the whipworms masking some of the clinical symptoms from the strongyloides, because as we all know, treatment with pig whipworms can actually bring remission, for any IBD, in most cases, so they might also mask other issues. I also agree that your upper respiratory symptoms certainly matched the normal effects of a strongyloide infection. Since they can affect virtually an organ, I would think that there is a very good chance that they affected the outcome of your scans, also.

Though fistulas are somewhat common with Crohn's disease, they are uncommon with UC, and rather rare for MC. That suggests that the strongyloides might have been responsible for the fistula, too.

Yes, I ate a very limited diet for over a year. Though I didn't realize it at the time, I'm very suspicious now, that I probably had some sort of mast cell reactions while I was healing. I can recall that a lot of the food intolerances seemed kind of vague, at the time, in that they weren't always consistent, as if something else were involved. I can remember actively avoiding oxylates, most of the time, and all types of sugar, and I was lucky enough to accidentally minimize my intake of most histamine-producing foods, (without even realizing it).

Interestingly, most of those foods don't bother me now, except that I've noticed that during the fall hay-fever season, I've had some unexplained D episodes, and they seem to be more noticeable, with each passing year. Hmmmmmmm.

We'll be looking forward to hearing good test results. You're most welcome, and thank you for the information and insight.

Love,
Tex

cludwig · Post by **cludwig** » Mon Apr 06, 2009 2:05 pm

Hi Tex,

I also wonder if my immune system was ramped up fighting the parasites and with them gone is now attacking my gut. As for the weird BM issues...could it be a problem with my autonomic system or a neurological problem? There is some literature that suggests a neurotransmitter problem with IBS. Also, allergic reactions cause mast cells to overexcite enteric nerve endings causing hypersensitivity and pain. The ketotifen is sounded better and better to me. The pharmasist who told me about this drug used it for about a year and said it really helped him.The only other theory I have is that one of my sphincters is not working properly....but I would think that would have been a life long problem and not one that develops after surgery. Thanks for listening.

Love,
Cristi