Newbie who needs advice

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tex
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Post by tex »

Patricia,

Yes, those test results may be slightly lower than they might have been if you had not been using Entocort, but they are certainly definitive enough to clearly show sensitivity to those foods.
Patricia wrote:Where do I go from here? Do I have to leave not just those foods away but also foods or medications where it says "processed on shared equipment with wheat, etc."? I am not sure if I should do a true elimination diet for the next few months (what if there are other food offenders?) or if I should just try to eat a very simple diet including only a few safe foods. But what are safe foods if there might be even other food offenders aside from those big four?
Most of us base decisions on whether or not to avoid foods processed on non-dedicated equipment on the company's reputation, our own sensitivity levels, and shared opinions based on experiences. In most cases, the risk is very slight, but many of us just avoid those products, to eliminate the risk.

As Dr. Fine pointed out in the explanation that came with your test results, with a double DQ gene combination, the odds are very high that you will indeed have additional food sensitivities, and you will probably react to smaller trace amounts than most of us. The safest foods to try in that situation are usually foods that you normally wouldn't eat, such as lamb, venison, possibly shellfish, sweet potatoes, etc. That doesn't mean that you will react to other foods, it just means that if you are guessing at safe foods, then those are foods that are the least likely to cause a reaction for most people. If you feel the need to eat a grain, rice is the least likely to cause problems, but be aware that a few of us react to rice.
Patricia wrote:When I saw my PCP I had asked her about it and she said at the time that it could be the beginning of arthritis. I think she said rheumatoid arthritis.
Patricia wrote:But the muscle and joint pains worry me just as much. They don't know what it is and they don't think it's connected to MC.
Arthritis was one of the first satellite issues to be reported as associated with MC, so your doctors are only about 30 or 40 years behind with their knowledge and understanding of the disease. :lol: Before my gut healed, my knees got so bad that I often had to use a cane, just to get around. My neck was stiff and sore, my left elbow was severely swollen and tender, and several fingers of my right hand had swollen joints, and were growing crooked and twisted. After my gut began to heal, I was able to throw the cane away, and I haven't had a need for it since then.

Yes, the symptoms are very similar to RA, but if you look more closely you will see that it doesn't fit the classic RA pattern. RA causes body-symmetrical inflamed joints, whereas MC causes random inflamed joints. The results can be just as permanent, though. Those fingers are still crooked and twisted of course, but the joints are no longer swollen and inflamed, because the arthritis is no longer progressing.

I agree with Jean that meat (protein) is a vital part of our diet in order to facilitate healing. I never stopped eating meat, and I didn't drink coffee before my symptoms began. I have been drinking coffee for the past year or so, though, and the symptoms haven't returned, because as far as I am aware, arthritis has nothing to do with eating meat or drinking coffee.

As Lisa pointed out, Claritin contains lactose, and you might be reacting to that ingredient. As she suggested, Claritin Redi-Tabs are free of lactose, but many of us use Allegra (fexofenodine) or Chlorphen-12 (chlorpheniramine maleate). Please be aware that chlorpheniramine maleate is a first generation antihistamine, so it can cause drowsiness, but it is much less likely to cause drowsiness than Benedryl (diphenhydramine), for example
Patricia wrote:Does the histamine content increase in leftovers over time?
There is some general information on how I believe that molds are the primary source of histamine in food on pages 172–174 in the book. To supplement that, consider that I can eat bananas that are just ripe without any problems. But if I wait a few more days until they become even riper, the histamine content continues to climb, and they will cause me to have histamine reaction symptoms (mostly severe itching, in my case).

I can eat leftover chicken soup for about another day after it was cooked (or thawed), without any symptoms. But if I eat it after it has been refrigerated for about 48 hours or more, it will cause a few symptoms. If it has been refrigerated for about 72 hours or more, it will cause severe symptoms.

The bottom line is that normal refrigeration temperatures (mid to upper 30s) are not low enough to stop the formation of mold, and therefore histamine continues to increase in the refrigerator. You can easily see proof of that by leaving food in the refrigerator until it becomes covered by visible mold. But of course, mold is only visible after it has been growing for quite a while. By the time you can see mold, the histamine level would be in the stratosphere. If the temperature was low enough, mold couldn't develop (and therefore histamine couldn't increase). Deepfreeze temperatures (0 degrees F or lower) will slow mold development to a point where it is usually no longer a problem. Therefore, many/most of us tend to freeze leftovers in individual portions, and thaw them just before reheating, to minimize histamine problems.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Gabes-Apg »

Wow! I read this quote online the other day, "knowledge is power, but action gets things done"

get the garbage bin ready for a big cleanout of pantry /freezer etc! Soy is hidden in so many foods.
Soy also has multiple names in foods, cosmetics/creams, medications - which makes it hard to make your life 100% soy free

I have this list typed up and in my wallet so I can double check if I am purchasing a new brand/type of item
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736

the sooner you eliminate soy and eggs, the sooner you will start to feel way way better.
As Tex and Jean have mentioned, good quality proteins natural animal fats are essential to healing. Doesnt have to be big serves, find the sources that you like, settle well, suit your budget and stick with them.

also in the histamine discussion, i freeze foods in portion size and reheat/recook as needed. For now dont worry tooo much about doing everything perfect. my suggestion, first step: get rid of soy and egg second step: figure out meals that work for you, what settles well and suits your schedule/lifestyle, then third step: work on minimising histamines. Dont try to do it all at once.

when you have wrapped your head around things, let me know if you want info/ideas on creams/moisturisers etc that are soy free and still affordable
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Post by lisaw »

Tex,

My joint issues were symmetrical, and worst in my hands, which is why I went to a rheumatologist to make sure I didn't have RA. I also had it in both my knees, but nowhere near as bad as hands.

Patricia,

I've never had a problem eating something that says made on same equipment...though you'll have to see how your own experience is.

Lisa
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Post by tex »

Lisa wrote:My joint issues were symmetrical, and worst in my hands, which is why I went to a rheumatologist to make sure I didn't have RA.
Are you saying that he ruled out RA?

Tex
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Post by lisaw »

Yes, RA ruled out.
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Post by tex »

:shock: Then apparently, contrary to what my (ex) doctor told me, MC-induced arthritis can occur in virtually any type of pattern.

Thanks for sharing your insight on this. :thumbsup: As I've said many times before — I learn something new here virtually every day.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Patricia »

Thank you so much, Lisa, Jean, Tex, and Gabes! You guys are wonderful and so helpful!!! :grin:
I will definitely follow your advice. I love the soy and the histamine list. It will come in handy while shopping!!!

Regarding the double DQ gene combination:
I have three teenage daughters. My middle one has always had headaches since she was two or three years old. The doctors could never figure out why. At the same time that I decided to leave gluten away we heard that one of her friends who had even worse headaches was told by a nutritionist to leave away gluten and was without headaches since. When my daughter heard that she decided that she also wanted to leave gluten away and try it out together with me. She left it away and found that she had more energy and no headaches. Well, until this week. We were at an event where there was only pizza and brownies, I didn't eat any, but she decided that she was done with gluten free and ate a few slices of pizza plus brownies, followed by more gluten food this week. What happened? She started having headaches again and felt absolutely terrible. We saw the pediatrician Thursday this week because of weird skin sensations she has been having on and off (feels like a burn to her if she touches her arm but nothing is visible). He wasn't sure what was causing this. I told him about her gluten free trial and he said gluten could very well be connected to the headaches. He is very open-minded and suggested that he would add the celiac blood test to the other blood tests he was ordering. Obviously, it might not be accurate since she was very strict for a month before this week. I don't know how fast the blood test changes after gluten ingestion. We have not received the results yet. But my daughter decided to go gluten free again, do another month of strict diet, then do another gluten trial and see if the symptoms reappear. If they do, she will know for sure to leave it away.
I don't think that my other daughters have any gluten sensitivity. At least not for now.
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Post by tex »

Patricia wrote:Obviously, it might not be accurate since she was very strict for a month before this week. I don't know how fast the blood test changes after gluten ingestion.
If she was gluten free for more than a couple of months, then the blood test result is virtually guaranteed to be negative. At a month on the GF diet, the result will depend on how high her antibody level was before she started the diet. If it was high enough, she may get a positive test result, but probably it wasn't high enough to still yield a positive result after it has decayed for a month on the GF diet.

Unless she is unusually reactive to gluten, a week of eating gluten won't have much effect on the blood test. It typically takes at least several months on a steady diet of gluten in order to do enough small intestinal damage to trigger a positive result on that test. The test won't show positive results unless she has at least a Marsh 3 level of damage, and that means extensive villus atrophy. That won't happen in just a few weeks of eating gluten.

The stool tests at EnteroLab are much more sensitive, and they will reliably detect gluten sensitivity for at least a year after gluten has been withdrawn from the diet.

The trial that you described (GF diet for a month, and then do a gluten challenge) will definitely tell her if she is sensitive to gluten. That's a much more reliable way to test for a food sensitivity than the blood tests that doctors use.

You're most welcome,
Tex
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Post by Patricia »

Very interesting. Thanks, Tex!!

Gabes: why is tuna on the soy list? It says to be aware of tuna.

I also noticed that Enterolab is testing for tuna, but not salmon or any other fish. What is the reason for that?
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Post by Gabes-Apg »

Fresh Tuna would be ok,
i think it is very difficult to find tinned tuna that does not have soy based additive.
I know the ones in Aus, even the tuna products in springwater have a small amount of soy in them.

Soy is a cheap ingredient, hence why its use has increased 100times in the past 10 years or more.

other Soy hints:
Vegetables and fruit are sprayed with Soy oil to make them last longer in air conditioning, refrigeration storage etc.
I peel a good 2mm off all vegetables before cooking them and do not use the peelings.

the same with eggs, especially those in supermarkets etc are sprayed with vegetable oil to make them last longer, (not an issue for you as you are avoiding eggs)

as you start to double check ingredients you will be surprised where soy is used, there are some fruit juices that have soy vegetable gum in it to give it the texture as if it is fruit flesh! Alot of dairy free sorbets use pea and soy as filler..
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Post by Gabes-Apg »

I did a quick google search - it is a commonly discussed topic
as most of the Tuna in water products have 'vegetable broth' which has soy.

this link has a discussion that has some soy free tuna brands
http://www.celiac.com/gluten-free/topic ... free-tuna/

The list of soy names etc was done up quite a while ago - even when I went Soy free 4.5 years ago there was barely any grocery products that were soy free, now there are lots, it is becoming and issue for more people and the demand is there.

I have a few friends (and friends of friends) that were gluten and dairy free but still having IBS, they removed soy from their diet and have vastly improved!

Hope this helps.
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Post by Patricia »

Wow!!! That's crazy! I would have never thought that soy oil is sprayed on produce! That's terrible.
And they don't have to declare this?
I am surprised how many products contain soy in any form.

Fruit juices often contain carrot juice, too. I guess for the color. I have always had to be careful because of my carrot allergy.

I guess the advantage of a gluten free, dairy free, egg free, soy free diet is that there is a lot less junk getting into our bodies ':grin:'

This is very helpful. Thank you, Gabes!!!
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Post by Gabes-Apg »

I would have never thought that soy oil is sprayed on produce! That's terrible.
Even more horrifying is that alot of organic shops sell product that has been sprayed with organic Soy Oil!! so the product is still 'ORGANIC'

Any wonder we have a world where AI issues, Thyroid Issues, Digestion issues are on the increase (and occurring in younger people) we are consuming products that genetically we were never meant to have. I joke about setting up a website - SOY IS EVIL!

The soy products that are used in our mass produced foods, as filler, as spray etc etc is the soy waste product that the asians would never eat. so it has none of the so called health benefits of soy.

good that you see this 'transition' as an advantage, that you will be providing very healthy foundation of eating for your family!!
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Post by Patricia »

I wouldn't have thought that the produce in organic shops is sprayed as well. Even worse!!

We had a share from an organic farmer last year and this year, which was great. We'd get 7 to 8 different kinds of produce every Thursday afternoon, picked by volunteers on Thursday morning. It can't get much fresher than that. And it's not more expensive than grocery store produce. But that's only from May through November. The rest of the year it's produce from the grocery store...I guess I'll have to be super careful with this soy thing!

My kids always thought I was a health nut. But this is bringing it to a whole new level....
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Post by Gabes-Apg »

I am growing some of my own vegetables, and have made friends with a local farmer who does not feed his chooks soy, so the eggs are very much 'soy free'
He told me how poorly his chooks were when he did try the feed that was high % of soy, and he will never use it again.

as I mentioned in the other post - it can get a bit full on trying to purchase everything perfectly, and eat and prepare everything perfectly to all the new rules that are now part of your routine... it can be a bit full on at first, but it will get easier.
meal at a time, day at a time, week at a time..

Yes - MC world is a whole new world!! never a dull moment...
Gabes Ryan

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