MC and 3 children

[crervin]

thank you Tex, I will check into magnesium. I have been soaking in epsom salts, but wont to check into the oil someone mentioned earlier.

[crervin]

Thank you Tex, just ordered magnesium oil and bought Epsom salt. Sadly, day 3 of Zantac (1 pill in morning), I'm having a "bad bout" morning. However, I was really stressed the night before and it happened before I took the morning pill......nonetheless, I am discontinuing it. May try Pepcid in a couple of days.

[tex]

Martha,

Some members here find that when 1 pill helps, but is not enough to last 24 yours, taking another antihistamine such as Benedryl at bedtime provides much better control, and also helps them to sleep at night. But as you suggested, sometimes changing brands will help, also.

You're very welcome.

Tex

[crervin]

This weekend I bought some GF foods to start eating, I have been DF for awhile now. I was feeling somewhat ok yesterday, with only 1 WD. So last night I decided to try the GF cereal and rice milk that I just bought. I thought well I can eat white jasmine rice pretty well. After I ate it within a matter of 10 min, I was so sick, nausea, gagging, cramping, rumbling. I went directly and took a unisom and a pepto pill. Later I came down with a migraine. Could there be something in the rice milk other than rice causing that reaction?

Also, I am looking into the Enterolab tests not sure whether to get the A1 + C1 panel or the B2 +C2 panel. Has anyone had any luck with insurance companies paying part of it? I was going to call my insurance today to ask. I live in TN.

I really can't eat anything currently. I feel like that is contributing to my migraine. I am going to get my husband to make bone broth for me. I took another zantac this am to see if it would help. It seems to help with all symptoms except the WD.

BTW, I just received Tex's book, so I will start it as soon as I can. thank you!

[tex]

Hi Martha,

I'm sorry that you had such a bad reaction to the GF cereal and rice milk. Did the cereal contain any oats, or any ingredient derived from soy or casein?

Rice Dream is a unique product. Barley is used to start the malting process for the rice used to make Rice Dream. This gives the product a natural sweetness, to minimize the need to add any sweetener. The company claims that the product is gluten-free because most of the barley malt is removed before the product is finished. Unfortunately however, traces of gluten remain. FDA regulations allow a product to be labeled gluten-free as long as the gluten content is less than 20 parts per million, and Rice Dream typically passes that test. Unfortunately some of us react to tiny amounts of gluten, so we react to the residual gluten in Rice Dream. I used Rice Dream early on, but I found that I did better with Hemp Milk. Hemp Milk still caused some minor bloating for me though, so I switched to Almond Milk, and I have been using it for years with no problems.

About 10 or 15 years ago, the makers of Rice Dream originally denied that the product contained gluten. But they got so many complaints that they finally began adding a warning on the label that the product might contain tiny amounts of gluten. After the FDA adopted the new allergen labeling laws (The Food Allergen Labeling and Consumer Protection Act (FALCPA) went into effect on January 1, 2006), that warning disappeared from the Rice Dream label, because the new law allowed the product to be labeled as gluten-free. Of course it is not actually gluten-free — it's actually a low-gluten product, similar to many other products that are labeled as gluten-free.

The bottom line is that many of us (and many celiacs) can tolerate that level just fine, but some of us react to trace amounts in that range. Most of us who are extremely sensitive to many foods do much better if we avoid all processed foods, and cook everything from scratch, using safe ingredients.

Back when I was still reacting, I had the same symptoms as you — including migraines. That all stopped after I changed my diet and my gut had some time to heal.

If you will call or email EnteroLab, they can give you the insurance codes for the tests you are considering and then you can ask your insurance company whether those tests are covered. Some insurance companies will only pay if a doctor orders the tests, but others will reimburse an expense paid by a patient if the tests are covered.

I hope that you will be feeling much better, soon.

Tex

[crervin]

thank you, I was debating between the hemp milk or it. the cereal is Van's cinnamon Heaven, it has 5 whole grains. I dont think it has soy or eggs. I am scared to try individually to see which either the milk or the cereal caused it. That helps about the ins codes. I will email them soon. This is so crazy how this disease has progressed in just 6 months. I remember eating salads occassionally 6 months ago.

[tex]

Martha,

Here is the ingredient list from Van's Cinnamon Heaven:

Van's Gluten Free Whole Grain Blend (Oat, Brown Rice, Millet, Quinoa And Amaranth Flours), Cane Sugar, Oat Fiber, Inulin, Invert Cane Sugar, non-GMO Expeller Pressed Canola Oil, Cinnamon, Salt, Calcium Carbonate, Mixed Tocopherols For Freshness.

I used to love Van's GF Frozen Pancakes. However, I'm one of the lucky ones here who are not sensitive to soy. I do react to pure oats, however, and apparently so do most other members here. The avenin in oats is a much weaker protein than the gluten in wheat, but it causes the same reaction for many of us, unfortunately. Congress, in their infinite wisdom, did not choose to include oats in the allergen warnings because many so-called "celiac experts" claim that celiacs can safely eat pure oats. Yet oats causes most of us who are sensitive to gluten, to react. Most likely the test trials they used when testing oats for celiacs were too short to allow the subjects to develop an antibody level high enough to trigger a positive test result. When I tried oats, I hadn't eaten any in about 5 years, so I had to eat it for about 6 weeks before I began to react to it. But once I began to react, it also took 6 weeks for the reaction to stop.

Many of us do not do well with the prebiotic Inulin, because if we have a bacterial imbalance in our gut, prebiotics tend to cause the "bad" bacteria to thrive faster than the "good" bacteria.

Also, if you are sensitive to soy, Mixed Tocopherols are often (not always) made from soy.

And there is a problem with some products that use multi-grain GF flours. According to spot checks of GF flours on grocery store shelves (that was done a few years ago by a dietitian), certain GF flours are sometimes contaminated with gluten. Millet is one of those that didn't fare well in the tests.

Contamination of naturally gluten-free grains

You're very welcome,
Tex

[crervin]

Thank you so much for your input! You are a Godsend and so is everyone on this site. Well sadly, I guess I need to go back to my meat and potatoes again. I may try a very small amount of the rice milk in a couple of days. With 3 children, it's so easy for a prepackaged food. Thankfully, my migraine is subsiding after I ate a baked potato and drank some Gatorade.

[crervin]

Tex,
I am reading your book and hope to get a sample to enterolab next week. I have a question for you, I am reading about being pregnant and DAO levels. When I was pregnant 4 yrs ago, my symptoms did resolve (and I wanted to stay pregnant for the rest of my life). Has anyone ever taken the DAO supplements and saw much improvement? Of course at the time, drs were treating me for IBS and I could control my symptoms somewhat with diet. I do believe though, over the last year I have let my health decline due to taking care of 3 kids and overworked husband that I was "junking" up on gluten to get me through the day while making my children eat fruits and vegetables that I thought were causing me more harm. Such a great book and an eye opener! I asked my GI nurse practitioner back in October if a nutritionist could help me. She said no, pretty quickly. I did find it surprising you were a mechanical engineer, I kept thinking biochemist (I am a retired chemical engineer and husband is an electrical engineer).

[tex]

Martha,

Surprisingly, as far as I'm aware, no one here has reported any significant benefits from taking a DAO substitute/supplement. Of course during pregnancy, DAO levels increase dramatically. It's even known that a woman's DAO level is influenced by her menstrual cycle. There's a good chance that the changes in DAO level may be the primary reason why so many women report that their MC symptoms are affected anywhere from slightly to dramatically by their menstrual cycle. Of course it could be said that the effects are due to hormonal changes (which is true), but hormonal levels and hormonal balance determine the DAO level.

While there are a few (mostly old) research reports available on the association of DAO levels with IBDs, there doesn't seem to be much interest in it as a serious treatment option. I have often wondered why there hasn't been more research in this area. Perhaps there are too many confounding factors to allow for well-defined (definitive) data results.

You know, when I entered college, I gave some serious thought to going to med school, but decided against it. I wasn't sure that I wanted to get into such a stressful profession. The day-to-day stress environment in medicine has to be chronically challenging (if for no other reason, because of all the frustrations imposed by the insurance fiasco, government regulations, and liability concerns). Of course eventually it dawned on me that engineering is actually not very far behind medicine in the competition for the most stressful occupation category, it just involves stress from different sources. I'm fortunate that I didn't get into medicine though, because I probably would have lost my license long ago, due to an inability to adhere to standards imposed by the State Board of Medical Examiners. I've never been much of a conformist, and the absence of that trait is generally incongruent with working in the medical profession.

Most of us dealing with this disease, regardless of our occupations and lifestyles, seem to have certain personality traits in common. We tend to be perfectionists and overachievers, and settling for anything less may not even be on our radar, prior to the onset of our MC symptoms. Many of us are engineers, doctors, nurses, dietitians, pharmacists, educators, and a myriad of other stressful occupations. It's surprising how many of us are runners, including a number of marathon runners. And there are many bodybuilders, personal trainers, etc. Obviously, being healthy doesn't exempt anyone from developing MC.

So it appears that we probably don't develop MC because we are unhealthy. More likely we develop MC because something in our environment/lifestyle is incongruent with good health. And IMO that something is chronic stress. If we are to successfully control the symptoms of MC, we have to learn to downshift a gear or 2, in order to reduce the stress level enough to allow our body to heal. IMO not only does chronic stress create an optimum environment for the development of an IBD or other AI disease, but it can also prevent healing. Knowledge and new innovations in technology are evolving so rapidly these days that our body may be having trouble keeping up with our brain. Maybe the problem is that we have forgotten how to relax, in today's fast-paced world.

Thank you for the kind words about the book. It might have been better if a doctor had written it (and it certainly would have had more credibility, especially in the medical community), but since that didn't appear to be happening, I though that someone certainly needed to do it. I'm collecting notes to be used in Volume 2, if I can ever find the time to write it.

Tex

[crervin]

Thank you for your reply. I will be patiently awaiting your next volume and would also love for you to write a specific diet plan to possibly achieve remission in the future. My husband always told me while in college my stress and type A personality was going to cause me health problems later on. I can't imagine being a dr and the stress level with that. I was going into pharmacy early on and am so glad I changed. However, like you said engineering is pretty stressful too.....

[Gabes-Apg]

Martha
came across this article today, and it discusses DAO and I thought you might be interested.

http://samanthagilbert.com/histamine-ma ... imbalance/

DAO is responsible for controlling histamine levels in blood fluids, not basophils and mast cells. Blood fluids are supposed to be very low in histamine. Mast cells are where most of the histamine in the body should reside.

An individual with DAO weakness may have normal whole-blood histamine, but very elevated plasma histamine and depressed DAO levels. Antihistamines and certain antidepressant medications can cripple DAO function and make symptoms worse.

A classic symptom of histamine intolerance in women is that they feel uncomfortable and miserable throughout life, but during pregnancy feel fabulous. This is because DAO can be at 500 times higher concentration during pregnancy.

[crervin]

Thank you Gabes! I will check it out. I haven't been on here for a few days. I am doing better on the gluten free diet. I am basically only eating (plain) meat with potatoes along with an occasional apple sauce and bananas.

I actually went to new GI doctor who was on this website today. I was wanting to try the bile acid malabsorption drug but he prescribed budesonide instead. He also took blood to see if I have celiac. It was really a waste of money and time. I am going to cancel the upcoming appt and the meds at the pharmacy. very disappointing again!

I am waiting on my test results from Enterolab that sent in last week. I have a question, (my cramping is about 80% better and praise God, my nausea is 100% better, since the diet change) my BMs are still D and I have about 2 or 3 in the morning. When I am in remission, will this resolve? I guess I am asking, how will I know I am in remission? I don't really know when to try to start introducing vegetables into my diet.

thank you so much for your help and your above link! The antihistamines are really helping and if I just take one pepcid a week on a really crampy day, it helps too.

[tex]

Hi Martha,

I've been wondering how you are doing. It sounds as though you are coming along nicely with your recovery. If your nausea and cramping symptoms are that much better already, you should begin to see some improvement in the BMs before long, and the urgency should begin to diminish. There are never any guarantees with this disease, but with any luck at all, yes the D should resolve.

And you will know when you are in remission by the realization that you feel like doing things again, and you aren't afraid to leave the house without knowing the location of the nearest toilet. You won't feel perfect at that point, because it typically takes a couple of years for the gut to completely heal, and most of us don't get all of our energy back until our gut completes the healing process. But fortunately remission usually comes long before the gut finishes healing.

Please allow at least a couple of additional weeks after you are in remission before you begin to try to reintroduce foods into your diet. Trying to add foods too soon (especially foods that don't work) can cause setbacks and/or slow down healing.

I agree that was a disappointing appointment, but the celiac test might provide valid results if you have only been following the GF diet for a few weeks. If you've been GF for several months or longer, though, the test result will surely be negative, regardless of whether or not you have celiac disease.

Thank you for the update.

Tex

[crervin]

Thank you Tex. That helps me alot! Will wait awhile before vegetables and surprisingly, no gluten is not that big of a deal to me.....