Howdy
Warning...lengthy post here...
Been lurking here for some time as I gathered info to help my 20 yr. old daughter. Thanks for the good reading! Finally posting due to hitting the wall with the GF diet.
Brief history...DD was dx with hypothyroidism at 16 (does run in family), at 18 with PCOS (polycystic ovary syndrome -another autoimmune condition) And then at 19 she had a bad bout of chronic D-resulting in a down scope & up scope...suggestive of MC & EC. So she was tested for CD & any allergen known to man/woman...nothing and more nothing!
Our first effort was a short-lived failed trial run of the GF diet. (Little did I know I was sabotaging her with Paul Newman's wheat-free cookies ) This is a child/woman who has ALWAYS loved to eat!
GI doc wanted to give her multiple rx's-all with possible nasty side effects, so after reading about Dr. Fine, I managed to get the go-ahead to do the Pepto route...some improvement for a few months...and then the D returned...Meanwhile I have had her take enzyme therapy probiotic pearls all along.
Since DD is a college student living away from home, going GF was not on her radar until coming home in May. She began following it in earnest for the last 8 months & it was like a miracle!!!! Immediate, positive results! Difficult for sure, but rewarding!
Now post holiday she seems to be having a flare & says she hasn't been quite "right" most of this month. I am distressed to say the least...not sure if we need to pursue additional food culprits. I did do quite a bit of GF baking for her.
In what order should we try eliminating??? Dairy (can you be just lactose or casein intolerant-or is it always both?), Eggs, Soy, Corn?
I am considering ordering the Enterolab tests ASAP because she leaves for a semester in England at the end of January. Thought maybe I'd call the allergist we visited to see if he would OK it for insurance purposes, but it seems like not many MD's know of Dr. Fine.
For those of you who have had MC for awhile, is it "normal" to have periodic flares for no apparent reason. And does any one know if tests might appear to be MC only because you have been unknowing gluten intolerant for years? This is the theory I have-but...feels like the old which came first the chicken or the egg dilemna!
If you made it here, thanks for reading it all-Suggestions/info would be very much appreciated!
Happy New Year to all!
Sue
Welcome to the board, and I'm glad that you've been finding some of the information here to be beneficial. Also, thanks for posting enough details that it's relatively easy to understand your situation. Not to worry, long posts are good, not bad, (at least they are in my opinion).
To address your questions - yes, most of us do occasionally get surprised by a flare from out of the blue, but it doesn't happen very often, and usually they're short-lived, like for a day or two, following a meal away from home, where something snuck up on us, for example, (okay, "sneaked" up on us, in case you happen to be an English teacher, LOL).
Unexplained flares sometimes occur during the fall of the year, for some of us, but there's probably a reason, and we just haven't figured it out, yet. If a flare has been going on for a month, she's probably accidentally getting some gluten in her diet, or else she has another food intolerance. Many of us are also casein intolerant. Casein is by far the second most common food intolerance, after gluten.
Almost all of us are lactose intolerant while we are reacting, because any enteritis, regardless of the cause, results in a reduced ability of the body to produce lactase, (the enzyme that digests lactose). Even a case of the flu will cause temporary lactose intolerance, until the enteritis ends. Lactose intolerance is not an autoimmune reaction, however. Autoimmune reactions are caused by certain proteins, that have similar characteristics, on a molecular basis. (Lactose is a sugar, as you are probably aware, so lactose intolerance is simply an inability to properly digest lactose, which means that it ends up fermenting in the colon).
Concerning the labeling of products such as the Paul Neuman's wheat-free cookies, that you mentioned. I find it very misleading, (and a disservice to their customers), for them to use labels such as "Wheat-Free", and then upon closer examination, the ingredient list shows that the product contains rye, or barley, which, (except for a few rare individuals), is just as bad as wheat. (When I say "them", I don't mean to pick on Paul Neuman's brand - there are a bunch of companies committing that "sin".
IMO, products such as that should be required to also state, (right alongside the "Wheat-Free" statement), "Not GLuten-Free", in red letters at least as large as the ones that say "Wheat-Free", unless, of course, the product actually is gluten-free). Many, many times, when I was first trying to sort out my diet, I eagerly grabbed boxes labeled that way, and then I had to put them back on the shelf, after I read the ingredient list. I'm just thankful that I always carefully read the label, and never made that mistake.
The Enterolab tests are very reliable, and they will definitely answer any questions about what she might be intolerant of, but unless your/her insurance will pay for the tests, or you have the money to spare, I would suggest that she simply cut all dairy products out of her diet for a couple of weeks, (in addition to gluten). If that doesn't do the trick, cut out soy, also. If the problem is not resolved by then, add eggs, and then corn to the list. There are a few other possibilities, but that list takes care of the most common offenders, and that is roughly the order in which they are most likely to be a problem, I believe. Or, she can cut them all out, and then, (assuming the D disappears), slowly add them back in, one at a time, until the culprit is isolated. Corn is very difficult to cut out of the diet, though, due to the fact that high fructose corn syrup is in just about everything. Also, a test does not exist for each and every allergen. For example, there is no test, (yet), for corn. Also, be aware that the gluten test only tests for the prolamin in wheat, known as gluten. It does not test for secalin, hordein, or avenin, for example, (which are the offensive prolamins in rye, barley, and oats, respectively).
If she is currently eating "gluten-free" oats, I would suggest that she stop that immediately, and see if that does the trick. Many "experts" are advocating that celiacs and others sensitive to gluten can eat pure oats without problems, but in fact, many of us are indeed sensitive to the avenin in oats. There is no test for it, but I proved that I was intolerant of oats in a trial last spring. Avenin is not very potent, compared to gluten, and there is much less of it in oats, than there is gluten in wheat, so it often takes much longer to react to it, (antibodies have to build up to a threshold sufficient to trigger a reaction). It took me six weeks to react, and then it took another six weeks for the D to subside.
Personally, I think that at her young age, and considering that she seems to be quite prone to autoimmune issues, using the diet to control her symptoms, instead of meds, is a very wise choice. I wouldn't be surprised if, (assuming that she can remain faithful to the diet), no other autoimmune issues will develop in the future. For individuals who are sensitive to it, gluten is a very toxic element, that can cause far-reaching problems, if it is not removed from the diet. It can be a very insidious enemy to good health.
I hope you find some of this helpful. If I haven't done a good job of explaining what I'm trying to say, or if I have confused you in any way, please don't hesitate to ask me to clarify anything that I've said, and if you would like to see references on any of this, I'll be happy to provide them. Just ask.
Also, please keep us informed of your daughters progress. We learn from each other, here, and feedback allows us to stay a step or two ahead of the GI docs, since discussions of this type, among actual patients, is about as cutting-edge as it gets, in the medical industry. As a group, we are probably five to ten years ahead of most doctors, as far as effectively, (and safely), treating MC is concerned.
I think Tex pretty well covered everything. I'm really sorry to hear that your daughter has already had so many problems at such a young age. I hope for the best for her.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
Thanks for the warm welcome & thoughtful responses, Tex & Shirley!
(BTW Tex, I AM a teacher -all subjects -6th grade elementary school..)
I did want to be sure dairy would be the next most likely culprit, though hoping we don't have to go that route. She did great getting off the gluten only at first. She has not been eating any oats, though she'd sure like to.
She has stopped dairy for 2 days now & been eating pretty simple to give her stomach a break. So far, so good...Wondering if if it all might be a result of holiday excess...Since Thanksgiving she's eaten many rich foods-loaded with sugar, eggs, & dairy.
We don't have a lot of time to do a trial before she takes off in a month, which is why I am contemplating springing for at least the dairy test. Might be good to just know for sure. How I wish the allergen testing was more precise.
Hate to send her off still trying to figure it all out-GF seems to be burden enough. And no, have no extra $$$ to throw around (teacher's salary after all...) Guess we'll give it few more days, reintroduce some dairy & see how it goes.
Welcome to the board! You are fortunate that your daughter is willing to consider changing her diet to accomodate this disease. I have a daughter with PCOS and IBS and at this point she refuses to alter her eating habits.
I'm posting because my discovery might explain sudden flares we have during the holidays.
I've been puzzling over a reaction I've had to eating turkey this season. I thought at first it was the solution injected in the turkey, so this week I purchased a fresh turkey from Butterball, which they claim is GF. Once again, I had a reaction. The second night I didn't eat the gravy and I didn't react afterward. I used tapioca flour for thickener, so I surmised it wasn't anything I'd added. Not only that, I'd made a ham earlier in the week and didn't have any problem with it or the gravy.
I decided to look at the roasting pan to see if there was any residual coating on it after cleaning. I always make the gravy in the pan that collected the turkey drippings. Sure enough, there were some baked-on particles. I realized that I'd cooked the ham in a different roasting pan that had a smooth aluminum surface and hadn't been used very much, thus no residual gluten was present.
My conclusion: I've been picking up some residual gluten from the pan. I'm going to purchase a new roasting pan and rack. I'm sure the rack, with all its crevices, has gluten particles too. Of course, I'm dismayed that such a small amount of gluten can cause a reaction. Just when I think I've covered all bases, I find something I've overlooked.
How old is your daughter? My daughter decided to do this with very little prodding..but it took her awhile to come to terms with the reality. I just kept sharing info I read-figured the doctor's we were seeing did not know enough and/or what would be best for her! She was getting to the point where something had to change! Food just did not stay in her unless it was rice & broth. Giving up food with gluten is not easy, but so much less vile than all the meds being offered!
She waited till she was going to be home for the summer months so we could learn together. Guess who has been the chief cook & bottle-washer I do get her in the kitchen as often as I can to make GF French bread & goodies.
As careful as I have been trying to be in the kitchen, it is certainly possible that one of the cookie sheets I used may have led to cross contamination. I had entertained the idea of buying a few new ones just for GF goodies-now I WILL be sure to. I do know that on one occasion my husband put her GF burger on the same plate as the rest & she got ill. Couldn't have been more than a crumb or two!
So you must have used this pan in the past to make gravy with wheat flour? We always do our turkey on the grill-would think that would cook off anything, but this was the first year of GF gravy in THAT same pan...HMMMMM...Guess I'll be buying a new roasting pan too
Gloria may have hit upon the key, with that observation. Quite a few of us have had that sort of problem at one time or another, in the past.
Here's another thing to watch out for - if your husband handled her GF burger after handling any food containing gluten, her burger was almost surely contaminated, whether he used his hand, a spatula, or whatever. All it takes is a tiny crumb. Many people cannot comprehend just how little it takes to cause a reaction. The current legal standard for a GF label on a product is 20 parts per million. That's an extremely small quantity, but even so, it is more than some gluten sensitive people can handle without reacting.
One of our members, (Jean), once ordered GF soup at a restaurant. When it was brought to her, however, she noticed a tiny piece of noodle floating in it. Since she was hungry, and in a hurry, rather than to take the time to have the waiter bring her another bowl of soup, she took a chance, and gently fished the piece of noodle out with her spoon, wiped off the spoon, and then ate the soup. Six hours later, she had a "full-blown" reaction.
I do a lot of grilling, and I find that if I completely burn off the grid, before cooking, I am OK. You can't use the same brush that most people use on the grill, though, because many people will begin brushing the grid before all the residue on it is burned to a crisp, and when they do, they contaminate the brush with gluten, so that anyone who uses it later, will contaminate the grid automatically, without even realizing it. Instead of a brush, I use a wad of aluminum foil to scrape the burned residue off the grid, and then I wipe it with paper towels. If you use a griddle, you can usually clean it sufficiently, by using a spatula to carefully scrape everything off the area on which you intend to cook a GF item, and don't use the same spatula for cooking, that is being used to turn items that contain gluten, unless it is cleaned in between.
Here's a problem that I often have, and a pet peeve of mine. I'll grill a bunch of meat at a get-together, (being careful to keep it GF, of course), and there will inevitably be someone who feels obligated to pick through and handle virtually every piece on the stack, before finding one that suits him/her. If that individual has handled a piece of bread, bun, cookie, cake, pasta, or whatever, before touching that meat, he/she is the gluten equivalent of "Typhoid Mary", as far as I'm concerned, and I don't eat it.
Anytime gluten free items are cooked in the presence of items that contain gluten, or following the cooking of items that contain gluten, constant vigilance is necessary.
Since you're kind of short on time, here's a little information on tests at Enterolab: Normally it takes between ten days and two weeks to get the results by e-mail, from a test at Enterolab. It takes a little longer, of course, if you want them to mail you the results. However, you have to order the sample collection kit, and shipping container, etc., ahead of time. The sample has to be frozen, (packed in the shipping container), and it will be picked up by DHL, for overnight delivery. They keep the sample up to about a year, I believe, so that if you should want another kind of test later, the same sample can usually be used. At least this is how it worked the last time I had some tests done there - it's possible that something may have changed in the interim, of course.
My daughter is married and living 1200 miles from me, so I don't have much influence over what she eats. She has good days and bad days with the D. She's decided that she can live with it, but I don't think she realizes she could be causing other problems down the road.
I have another married daughter who lives just 1/2 hour away. She is beginning to show signs of intolerances: pain in her finger joints and hair falling out. Her doctor doesn't know what's causing her problems. She's considering ordering the Enterolab tests - at the least the genetic one and I believe she would be willing to change her eating habits if necessary.
I've only been GF since June, so I'm still learning. It never occurred to me that my trusty old roasting pan could be contaminated until today. Worse, out of habit my husband threw 2 tablespoons of wheat flour into the cooking bag and put the turkey in it. When we realized what he'd done, we rinsed the turkey thoroughly and put it in another bag. Neither one of us can remember if we used regular flour the previous time I reacted. Who knows - that could have been the contamination then and now.
You never know what you can do until you have to do it.
Reading, trials and great advice are the basis of our board. I can totally relate to your daughter as well as the majority of us here. I cannot add much more to what has been said but at least your daughter is going to the most GF friendly country there is. My son and his family live in England and when we visit the restaurants and stores know what GF is all about. She will still need to be vigilent since they do consider oats - the majority of them - to be non gluten.
I wish her luck in school and if she is going to be computer accessible, she should try checking in every now and then and report how things are going. You are a great mom to be so supportive for a condition that is at times quite baffling.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
I think kitchen contamination is my biggest challenge these days. My husband and his two kids are not on any special diet (well low sugar as diabetes runs in his family). I do my best to seek well cleaned, crumb free areas, but when we are all in the small kitchen making grilled cheese sandwiches, or breakfast or whatever, it is almost impossible I think despite my best efforts.
) This is a child/woman who has ALWAYS loved to eat! 
-all subjects -6th grade elementary school..)
You are fortunate that your daughter is willing to consider changing her diet to accomodate this disease. I have a daughter with PCOS and IBS and at this point she refuses to alter her eating habits.
She's considering ordering the Enterolab tests - at the least the genetic one and I believe she would be willing to change her eating habits if necessary.
