Back with a flare --- and a confession….

[C.U.B. girl]

I was finally diagnosed with celiac in 2008, and went gluten free immediately. After my CC diagnosis in May 2012, it took several weeks on a rotation diet to get my symptoms under control, but eventually I got my my life back. I took an ALCAT test for food intolerances which showed sensitivities, to one degree or another, to about half of the 200 foods tested for. The rotation diet was included with my results, and I stuck to it like feathers to tar for four months with very good results. I think I even posted somewhere in the forums about it, then got on with my life and only returned to the forums from time to time to read, without even logging in. I thought I was done with it………

****** And now for my confession…. *******

But over time, I admittedly got sloppy with my eating habits Too many GF junk foods, too many processed foods, even ice cream on a regular basis, even though I was casein-sensitive…..

And now it's caught up with me…

Since my son's birthday celebration on June 1, when I had (in the course of six hours) two pieces of GF chocolate cake with store-bought canned icing(full of soy and heaven knows what else), and vanilla ice cream on top of each piece, my symptoms have been slowly returning….. and in the past couple of days, the dam has burst….

Which isn't to say I haven't tried to avoid a full-blown flare. When I noticed things starting to deteriorate, I retrieved my old test results and rotation diet, but then also thought I'd combine it with aspects of the SCD diet (eliminating all grains and starches), but without adding in the dairy that is allowed by SCD. Made myself a big batch of chicken bone broth and a couple batches of fruit juice gelatin; have eaten only organic fruits and veggies, free-range chicken, grass-fed beef, and avoided the "bad" foods like the plague. Thought I'd be all better within a couple of weeks…...

But this disease is so sinister. Instead of getting better, I've spiraled downhill rapidly the past few days, even while doing everything "right". I've lost five pounds in less than a week, which is a lot since I had topped out at 124. I've taken all the Immodium in the house. Pepto Bismol doesn't begin to touch it. When I changed my diet two years ago, I began to improve within days, but now I'm just getting worse.

Is it possible for food intolerances to change over time? Could I have developed new sensitivities I'm unaware of, or is there just so much damage and inflammation from bad eating habits that it's going to take a lot more time to heal than I thought? How do you handle a flare when the old remedies don't seem to work? I'm open for suggestions……

[Grahm]

I'm fairly new here but I feel your pain. I'm anxious to see what everyone says.
Good luck to getting your life back, you seem to be so strong, I'm sure you will:)

Connie

[tex]

Hi,

Sorry to hear that you seem to be unable to turn this flare around. While this is strictly speculation, IMO it's logical to assume that when we are in a flare we tend to react to foods that would be only a minor problem if our gut were not inflamed. Perhaps you are one of the few members here who are sensitive to chicken. Turkey is generally a safer choice in a flare, because virtually everyone seems to be able to tolerate it without any problems. Fruit juice can be a problem. Like many here, I couldn't tolerate it when I was recovering.

A surprising number of us are sensitive to beef. Lamb is usually a much safer choice, when in doubt (or venison, or rabbit, etc.). Fruits and vegetables pose a double jeopardy for us because of both the high fiber content, and fructose. Most of us can tolerate very little of either one, when in a full flare.

And yes, once we are in a full flare, it can take a while to resolve, even if we do everything right. If you haven't allowed any gluten (even traces) to slip into your diet though, you should be much better in a week or so. If that doesn't happen, then you may need to make some additional diet changes.

Good luck, and I hope that some of this is helpful.

Tex

[Leah]

I would take out the fruit. I can't drink juice even when I'm doing well!
good luck
Leah

[coryhub]

Hi CUB girl,

Sorry you are caught in a bad flare. Your post is a great reminder for me to be cautious of "junk food" gluten-free products. I get lazy and cocky with my eating habits too. Last time I flared it bad and was taking me so long to pull out of it that I resorted to my stand-by procedure which is to take one Entocort pill a day for 10 days. I combine this with my 'safe" foods list. This is just my personal experience of what works for me. I average doing this a couple times a year when I get in dire straights.

Feel better soon,
Cory

[C.U.B. girl]

Thank you for the tips, y'all!

@Tex, I do suspect that chicken may be a problem. It showed up as a "mild intolerance" on my tests, but because the only meats I didn't react to were beef and duck, chicken was included on the rotation diet once every four days in order to give me more protein choices. Turkey was in the same boat -- a "mild intolerance", but included as an option once every four days. That being said, when I made the bone broth I used chicken carcasses that were in the freezer. I was helping myself to it twice a day, thinking I was doing a good thing ---- until it hit me that chicken was one of my sensitivities, and I probably should have made beef broth instead! So I've been overdosing on something I'm sensitive to. Add to that, I had chicken for dinner last night, and ended up with D 4x in 5 hours….. Lamb and venison were in the "moderate intolerance category, and pork was on the "high intolerance" list --- so there aren't many protein options left, especially without soy, dairy, or nuts!

@Leah, I did cut back on the fruit today -- only one peach, which is on my "safe" list --- peeled of course, and didn't seem to have any trouble with it. But I had a sweet potato for lunch -- then listened to my stomach gurgle, followed by a sneeze, sinus congestion, and my nose running! Ugh! I'll probably pay for that one in the middle of the night tonight, but at least now I know that sweet potatoes are a problem for me. I never would have suspected that, had I not eaten one all by itself without a meal surrounding it…..

@Cory, yeah, I had kind of deluded myself, thinking I had this thing licked since I was able to control it so well with diet the first time around. It has shown me that I can't play fast and loose with my diet, even if I'm in remission. Lesson learned! When I am over this flare (I'm saying "when", not "if" ), I am going to be much more careful from now on!

[tex]

Based on the sneeze, sinus congestion, and nose-running symptoms, you appear to have a mast cell/histamine problem, and that can trump your food sensitivities. You may find the short articles at the following links to be helpful:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

I would try an antihistamine or two if I were in that situation. You might be surprised at how much they can help. Many members here take 1 in the mornings (a non-drowsy formulation), and Benedryl at night (it also helps as a sleep-aid).

Tex

[C.U.B. girl]

Wow --- I read all four of the articles on mast cell issues, Tex, and I must say they were eye-opening!

When I had skin tests for allergies done a few years ago, I reacted -- to one degree or another -- to all but three of the 40 irritants used. They weren't food items, but grasses, trees, mold, etc. The doctor called me a "highly allergenic" person, which I thought strange, because by and large, I had few of the usual allergy symptoms that most folks have. Guess all my allergies show up in my gut!

I had been taking one Zyrtec at night for a while but got out of the habit for some reason; think I will start back on them after reading the articles. And during one phase of my life when I was really having trouble sleeping, I used to take a Benadryl at night, which worked like a charm. Since you mentioned taking both of them, I assume people have done that with no safety issues? Just didn't want to OD on antihistamines…..

Thanks so much for picking up on that based on my sweet potato reaction -- I'll be on the lookout for more of those reactions in the future!

[Zizzle]

CUB Girl,
I'm also sensitive to pork, and to a lesser extent lamb. If you read up on the GAPS and Autoimmune Paleo diets, you learn that bone broth is one of the mainstays of the healing phases of the diet. I'm trying to make a pot of beef bone broth every week. It forms way more gelatin that chicken carcasses, so it should have more healing collagen. Ox tail bones with meat on them are my favorite for making broth. I add high quality salt, some vinegar to help draw out the gelatin and marrow, garlic cloves and herbs. I simmer for several hours and cool, putting the pot in the fridge. Then for each meal I scoop out some concentrated broth (now gelatin), add some water and cut up veggies like carrots, chayote or other squash, a few leafy greens, sometimes some rice noodles. Makes an incredibly satisfying meal.

[Leah]

I am one of us who takes a non-drowsy antihistamine in the AM and a Benadryl in the PM. It seems like we could actually take 4 times the recommended dose before we "OD". When I seem to be in a mini flare, I sometimes even take two Allegra ( instead of one) . That usually puts me back on the right track. Also, when I know I will be going to a party or drinking white wine, I will take an h-2 antihistamine ( also called acid reducers) like Pepcid or Tagament so I can enjoy my social occasion without worry.

Recently, I started using a lotion with magnesium in it ( because taking it in pill form can cause D) and I believe it is working with this histamine thing. So far, so good. Maybe one day I will be able to back off the pills. For now, I am happy just to be able to live my life :)

PS, with histamine issues, I don't know whether I would do the bone broth thing because it is high in histamines…. but if you do, freeze individual servings and use as needed. No leftovers!

Leah

[C.U.B. girl]

Zizzle, the bone broth you make, and then what you make with it, both sound delicious! I'm pretty choosy about my beef -- has to be grass-fed, no anti-biotics, etc. -- but I just checked the list of what my local supplier has, and they do sell oxtails, so I may run up there this weekend and fetch some (I use the term "local" very loosely --- the farm is about a 45 minute drive, one way!)

And Leah, how can you tell when a food has a high histamine level? Is there a list somewhere I can refer to, or do we just go by trial and error and wait for a reaction in order to find out? (I hope it's not that! ) Think I need to do more research in this area, so any help you or anyone else can offer will be much appreciated.

I've stopped with the chicken broth for now, since chicken is one of my sensitivities, even though it's a mild one. Or at least it was mild two years ago…… maybe it's jumped up a category or two since then…..

Debating whether or not to cough up the cash for an Enterolab test, since from what I've been reading, stool testing seems to be a more accurate determiner of sensitivities than blood testing, which is what I had last time. Think I may give it a couple of weeks and see how things go; if I'm not making much progress, it might be worth it….

Thanks again, y'all --- never in a million years could I get this much help from a doctor!

[tex]

Since you mentioned taking both of them, I assume people have done that with no safety issues? Just didn't want to OD on antihistamines…..

Leah is correct. Allergists commonly prescribe antihistamines at 4 times the labeled dosages for treating chronic urticaria, so we know that 4x the labeled dose is safe. Personally, I wouldn't use more than that, because sensitivities to all medications vary by the individual, and research shows that 10x the labeled dosage of most antihistamines can be toxic for the "average" individual.

Leah is also correct about using bone broths. There are many lists on the internet, and all of them are slightly different, but basically the most troublesome offenders include dairy products, alcohol, fish that are not fresh or fresh-frozen, and any dried, fermented, or aged products. Ageing allows molds and fungus to grow (they will usually be invisible, but they are there), and as far as I can tell, molds are the primary sources of histamine in food (although I don't see anyone else pointing out this observation on the internet), and so the longer foods age, the greater the mold growth, and therefore the higher the histamine content. This also applies to fruit. For example a banana that is barely ripe usually has only a moderate histamine content, but each day that it continues to ripen allows the histamine content to increase at an accelerating rate (an exponential rate).

Chicken stored in the refrigerator does the same thing. I can eat chicken soup that has been stored in the fridge for roughly a day, without any noticeable effects. After 2 days of storage, I notice minor symptoms. After 3 days, I notice major symptoms — D, major bloating, runny nose, watery eyes, throat congestion, itching, etc. And I'm not talking about sloppy refrigeration temperatures here. Typical recommendations for refrigerator temperatures are in the range of 38–42 degrees F. I keep my refrigerator temperature regulated between 32 and 35 degrees, but that is still not enough to prevent a histamine development problem. The only way to stop the development of molds/histamine is to store foods (including leftovers) at deepfreeze temperatures, at 0 degrees F, or below.

IOW, when I make chicken soup, I don't allow it to sit around growing mold. After slight cooling, I freeze any leftovers in individual portions and then thaw them as needed, in the microwave, in order to minimize the exposure time at elevated temperatures.

Here is a link to a site that contains example lists of high-histamine foods, and foods that promote the degranulation of mast cells (to release histamine). Note that there are also medications that promote histamine problems, by various mechanisms, including interfering with the action of diamine oxidase (an enzyme produced by the body to purge excess or left-over histamine from the system).

FOODS THAT CONTAIN HISTAMINE OR CAUSE THE BODY TO RELEASE HISTAMINE, INCLUDING FERMENTED FOODS

You can find a list of medications associated with this problem in Table 5 of the article that can be read at the link below (or on page 170 of my book):

Histamine and histamine intolerance1,2,3

Tex

[Leah]

Perfect answer Tex. This should help cindy tremendously. I read part of the articles and it was the first to mention lettuce ( not just spinach) as an issue because of sulphites. Interesting. Maybe that is why I can eat raw cabbage with no issues, but still react to green salad ( although I do eat small ones now with minimal problems…. quantity, quantity, quantity)

Leah

[C.U.B. girl]

Gosh, there is so much I still have to learn about this whole thing. It's a wonder I managed as well as I did for the past two years! Never, ever would have thought about the histamine issue without hanging out here -- I appreciate the help more than you know!

(And thanks again Tex, for getting my account straight so I could log in again! I had a brief moment of panic when it seemed my lifeline had been cut! )

[nerdhume]

Just wanted to add my 2 cents worth
I have been taking Zyrtec every morning and Benadryl at night for quite a while. It never occurred to me that I could take more than the recommended dosage. Now if I get congested in the afternoon I will take another one. If I wake up in the night I calculate if I still have 4 hours or more of sleep time then I will take another Benadryl.