Cinnamon

I know this is a really old question, but I was struggling with the same thing and had no idea what was going on and doctors were no help at all. Now I think it's mast cell activation. Google it and see if it sounds like your symptoms. I just wanted to put that out there in case anyone else also had this type of reaction.

Have you ever tried enteric-coated peppermint oil? It's supposed to kill a lot of bacteria without being harsh on your system. Also cod liver oil capsules are good, too.

Don't get discouraged! You'll get to the bottom of this.

I used it in the beginning and thought it was helpful. There was something soothing about it. I'd definitely recommend it, but do be aware that if you are pregnant or could be pregnant, it's something that could cause a miscarriage.

I also used Super Digestaway, was helpful as well. Good luck!

We used an over-the-counter supplement that contained bile, and it really helped.

We had a guinea pig with kidney stones a few years ago, and the vet told us to put cranberry juice into her water bottle, which she loved. It did help. They say cranberry juice helps with utis. Or you could get some D-Mannose from the health food store and open the capsule and put some of it into her food.

I'm doing a gluten challenge with my 12-year-old, and so far it's going fine. We don't have a diagnosis of anything since I had already taken him off gluten before we went to the doctor, so it was too late for traditional blood testing. All I knew was that whenever he had gluten, he had scary neurological symptoms as well as a rash. He's been gluten free for a little more than a year. But around Christmastime, he started having some accidents. He accidentally ate some candy that had barley malt in it, and strangely had no reaction. Then he ate the glutenous Red Velvet Cake I'd made for Christmas rather than the gluten free version, and again no reaction at all. Then he started purposely cheating, so I figured now's the time to do the gluten challenge and get some proper testing. He's been gorging on everything gluten since Jan. 5 with no reaction at all. I plan to take him for bloodwork after he's been eating gluten for 3 months.

I'd think you'd start to see symptoms by now if she was going to have them, but everyone is different. Some people take several days to react, some react within minutes. You just have to see how it goes. Some are silent celiacs and have no symptoms at all, so we can't really go by symptoms. I know that when puberty hits, the immune systems matures and certain blocking mechanisms kick in, so it can seem like the child has outgrown the problem when that's not really the case, though at age 3 that wouldn't be the case for your daughter. I'd recently taken all dairy out of my son's diet and had been really strict with it in the days prior to all this, so I wonder if the whole thing was some leaky gut situation caused by dairy. I just don't know.

Well, I hope it goes well for you and your daughter!

I have a son with ADHD and dyspraxia, both of which are problems with dopamine in certain areas of the brain. I tried giving him tyrosine to boost his dopamine, and it worked amazingly well for a few days, then stopped working.

I tried giving him a higher dose, and that worked for another day or two, then stopped working. I was afraid to increase the dose any more, so I took him to the doctor, and this is what he told me. He said the brain is an amazing thing, it constantly monitors what comes in and makes adjustments accordingly. If you keep on giving it a high dose of only certain amino acids, it will make adjustments in order to dump it. But he said it depends on the plasticity of the person's brain. He said he's seen it work in a few adults, but not many. And he said it will never work in a child because their brains are so very plastic, constantly adjusting and changing.

It's worth a try, though. You never know, it might work and continue to work depending on the plasticity of his brain, which is less in adults. It sure did work for my son for those few days. Nothing including ADHD medication or gluten-free diet did as much to alleviate these problems.

I hope it works for you!

That sounds great, and nows the time to do it, while you are young. Just be careful with Jamaica. We had friends whose niece wrote travel articles, and went to Jamaica to write a piece on it. She never returned, and to this day they don't know what happened to her. As they tried to figure out what might have happened, they found out that while Jamaica is quite safe as long as you stay on the resorts, the rest of the island is not. It's not safe to travel around by yourself. When choosing a destination, try to research what the natives attitudes are towards outsiders. You don't want to go somewhere where the natives are desperately poor and where the police aren't the greatest. Pick a place that has a reputation for safety.

Maybe your doctor would be willing to give you a prescription for Tylenol with codeine just to get you over the initial hump. Codeine is a mild opiate, and might make the cravings less. Then you could step down from there. My son had the same withdrawal thing, but it only lasted 2 days and then it was over. It truly was like a drug withdrawal.

I have a 16 year old who also had a persistent cough, and since his younger brother and sister have gluten problems, I wondered if he did, too. I took him to the doctor and asked, and the doctor told me that yes, a cough could be a symptom of celiac disease, it's not a common one but it could be attributed to it. He did the blood test which came back negative, and now I think it's an allergy to molds.

I never see anyone mention bile, but if you google "celiac bile", it's a common thing to not have enough bile excreted during digestion. I have a supplement that has pig bile, betaine HCl (acid) and various enzymes, and it really helps with the bloating.

PS- I love llamas too! I live right down the street from a llama and alpaca farm.

Meline, if you go to buffaloceliacs.com, on the left you will see "helpful downloads". Click on that and scroll down until you see an article entitled, "Putting the Pieces Back Together" by Roy Jamron. It will say, "click here" and that will take you to the same article.

It's going great so far!!

Tomorrow I'm going to do the Tuna Challenge. I'd love to be able to eat it again!

A few people have posted about having low stomach acid, and after searching for info about it, I think this might be a really big problem for many. I was reading the attached paper, and it sounds like he's describing what many here have gone through with bacterial overgrowth, additional intolerances, B-12 deficiencies, etc. Read it, it's really interesting! Maybe it really is as simple as this! I tried the baking soda test on 3 family members with gluten problems, and not one of them burped even once. This may be a pretty common problem, and easily fixed!

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Could it be that you have another intolerance? My daughter had a stubborn case of candida which would get better on anti-candida supplements, but would come right back within a couple weeks of stopping the supplement. I had her tested for IgG allergies, and while those tests are not always accurate, they seemed accurate in her case. Eggs showed up as a problem, and when I cut them out, the candida went away and hasn't come back since.

I think a case of candida that doesn't go away or keeps coming back is a sign of some underlying issue. A healthy immune system is able to keep candida in check, but if it's preoccupied with other things, the candida runs rampant.

They have a variety of functions. Here's a chart that shows what each one does:

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You're right, it's very complicated, and it's probably foolish to play the armchair scientist. But it's very interesting!

Wow, that's terrible. I just found out that stress fractures don't show up on x-rays. My 15-year-old fell down the stairs last week and we had the same sort of situation. The x-rays didn't show anything, so we assumed all was well. But day after day he didn't get any better. Then we took him somewhere else and they said that stress fractures don't show on xrays. They told us to give it another week and if it wasn't better to come back.

And meningitis, oh my gosh! What if it was the bacterial type! Thank God you finally got some good care.

This is an interesting question and one I've been wondering about as well. But I was wondering what the role inflammatory cytokines play in the development of other intolerances. I was thinking that after years of being on high alert, our immune systems can't just relax and go back to normal when we finally take gluten out of our diets. I don't think the inflammatory cytokines go away. There are many kinds of cytokines and they're necessary for modulating the immune system, but some cause problems and inflammation.

I was thinking if there was some way to decrease the inflammatory cytokines but keep the good ones, that might be the way to go. I read that N-acetyl-cysteine is supposed to upregulate the good guys but lower some of the bad guys, so I tried it to see what would happen. But it gave me really bad heartburn and indigestion, so I had to stop, so don't know if it would help.

I don't think I explained this very well and I'm not very knowledgeable about these things. It's tough slogging through some of these research papers, too. But it's really fascinating to me. What do you think?

I think that the very best situation we can get is to have a good, knowledgeable doctor who is up-to-date on the latest in celiac diagnosis. If we all had that, there would be no need for Dr. Fine and Enterolab. But let's take a look at the titles of some of the other threads in the Doctors section of this site. One of them is "Uphill Battle with Family and Doctors". Another is, "Doctors Just Don't Understand". Another is "There is Stupid and Then There is Stupid". Another is "Top 5 Reasons to Get a New Doctor" with 9 pages of horror stories. Another is "Tips for Finding a Good Doctor", subtitled," Another Frustrating Experience...." The fact is many have pooped out with doctors. Some of us have insurance companies to deal with and can't just keep going from doctor to doctor until we find a good one.

Enterolab gives us another option when we've run out of options. And options are good! I didn't care that he hasn't published, and I'll bet many who are healthier now because of eliminating gluten due to his testing method don't care, either. If you don't like him, don't use him. What's great about his method is that you can use it after you've already gone gluten free, or gluten lite. Many have instinctively cut out gluten on their own, and now cannot use regular testing methods without going back on gluten, which they are not ever going to do.

The bottom line is that there are people who are healthier because of his testing methods, and that's a great thing!

The Gluten Free Market carries Conte's products. they are in Fair Lawn. I don't know how far you are from there, but we live near Parsippany and it takes about 1/2 hour to get there, up 287 to 208 and they are right off 208. I was trying to find out their store hours the other day, though, and had typed their name into a search engine to see if they had a website (they don't seem to, I couldn't find it) but a For Sale listing for them popped up from Craigslist! I didn't know they were selling the store! I hope whoever buys it keeps it a gluten free market!

Yes, I second the slippery elm! I remember several months ago having the same thing, and then reading a post from Yolo talking about slippery elm, and tried it. It really helped! It really has a soothing effect on your intestines. And do try going without the Brita. It could be the coconut, many people can't tolerate coconut. Do the kids have hamsters or parakeets? Their food usually contains wheat. That's something that I hadn't thought of until recently. Don't worry, we will help you figure this out!

Soy can do it to you, too. Once I accidentally bought soy milk instead of rice milk, and wow. Two days of horrible brain fog for my son where he was almost non functional. You might want to try deleting it for awhile and see if things improve.

We've tried activated charcoal capsules, and I think they help somewhat. They're supposed to absorb all the bad stuff, but unfortunately they absorb all the good stuff too, like vitamins and minerals, so if you have vitamin deficiency problems I wouldn't try it. It will also absorb any prescription medication, too.

There are enzymes on the market specially developed for autistics that break down gluten and casien. I tried them for my son, who's not autistic but has ADHD and seems to share many of the dietary problems that autistic children have. I thought they worked well for him. He improved greatly on them, but he really needs to stay off gluten entirely. He's likely a celiac or gluten intolerant, and for them enzymes are not the answer. But for an autistic child, they may be. They are easy to try and maybe if the parents saw improvement, they might be willing to try the diet.

If you do an internet search for autism and enzymes, lots of information will pop up. They might be game to give something simple like that a try.

Another thing to consider is the iodine content of the supplements. Do they contain kelp or seaweed type ingredients? Sodium alginate? High amounts of iodine can aggravate DH. Check the labels.