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    Do you have questions about celiac disease or the gluten-free diet?

Rachel--24

Omg...i Might Be On To Something

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I never thought of lyme until now. But it kinda makes sense, he gets joint pain all the time. He gets disorientated and really bad mood swings. His Eos has gotten higher in the last year. I need to find that article on ilads, do you know were i should look.

Im also interested in this EE disease, were can i find information about this.

paula

I'd get your pediatrician to do an IGeneX test, just for peace of mind. Those sound like the most common symptoms for teens. Of course they can be from other things, but the arthritis... that's suspeicious.

EE is Eosinophilic Esophagitis. It's where the eosinophils gather in rings of basically scar tissue in my esophagus narrowing it. Topical steroid treatment is the standard, but I'm hesitant to start that because of the Lyme. We found out that I have this disease because of the EGDs I had. My esophagus is about 1/2 the diameter of what it should be, but I only occasionally get symptoms. There are other eosinophilic diseases (google! :D) of different organs, including liver, colon, and the small intestine (that I know about).

There are different ways to go about treating these diseases. They're considered "new" so nothing has really been standardized yet. Some drs advocate removing the allergens (because the eosinophils are caused by allergic reactions), but it's been found that people typically end up with literally *nothing* to eat, because they start reacting to everything. On the other hand, my dr just wanted me to do the steroids.

Also, my GI said that eosinophil levels as high as mine (they've been consistent since I was 11yrs old) aren't typical with eosinophilic diseases, but he didn't want to pursue it. <_<

Here's the article about the eos/babs link. :)

Birdy

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I went today to see the Dr that Dr H wanted me to see for NAET treatments. I'm even more confused now than when I went in there! :lol:

Kassandra, I wonder if the months of ABX have actually made headway with the lyme which is why it shows as less of a stress right now. That doesn't mean it isn't there. I also wonder if it has "buried" itself in the tissues because of the ABX treatment and is in a more inactive state.

I think at this point I would cautiously weigh in favor of trying the Melarone. Last winter, I was new to using ART, and decided that I need to try a month of Levaquin for the bart. However I didn't do that well on it, didn't really herx or make any progress. I felt better going back to Zith--which I tested well for. That gave me the courage to try going off Zith this summer and trying Enula (testing showed I couldn't take them together).

I can connect with the confusion you feel with the different input you are getting. I have struggled with that too. It is hard because each new treatment takes time to try. With me, I just go up and down, so I don't even always know what is bringing on the improvements or the relapses. Also each choice of new treatment means more money and time investment.

About the layers in the testing, my recent experience shows that with no parasites showing up on ART but I just got rid of a bunch of roundworms since starting SCD.

The last couple of days I am feeling much better, so I am hopeful that the SCD+high Vitamin D+the new herbals is working. Tomorrow I see Dr. E for my last ART testing before I head back.

Sherry

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I thought you showed some improvement after getting rid of one of your alien babies? According to Humaworm's website- they recommend that treatment be followed up to get the younger babies and eggs.

No...I never had improvement with parasite treatment....or evidence that I got rid of any alien babies. It would have been nice though. :)

I actually got worse after I treated parasites. I was able to eat alot more foods for 1 month prior to starting the antiparasitic. So if it killed any parasites it didnt improve my situation because I became overly sensitive again.

I wasnt doing Humaworm. I dont test well for any herbals. Yes....I was suppossed to have a round of Alinia every 3 weeks (full moon) to get to the babies....or any that may have survived previous treatments. The treatment wasnt helping me so I stopped. If its not helping then I'm not going to continue. I considered the treatment to be a minor setback.

Thats why I'm not gonna focus on them until the other stuff is addressed....or until they're showing up strongly.

In all of the testing I've had it was only once that a tapeworm (Cobra) showed up. It didnt show up in my last session.

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I never thought of lyme until now. But it kinda makes sense, he gets joint pain all the time. He gets disorientated and really bad mood swings. His Eos has gotten higher in the last year. I need to find that article on ilads, do you know were i should look.

This can also be caused by the mold exposure. I'd look into Lyme too.

Any one of these things can be contributing to the bi-polar symptoms.

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Kassandra, I wonder if the months of ABX have actually made headway with the lyme which is why it shows as less of a stress right now. That doesn't mean it isn't there. I also wonder if it has "buried" itself in the tissues because of the ABX treatment and is in a more inactive state.

The Lyme could definately not show as a stressor because she's currently treating it. The first time I had ART I stopped all treatments/supplements a couple days prior to testing...so that she could get a more clear picture.

The thing is I dont think she's noticed much improvement during the treatment. If Lyme was a big issue and she'd made headway (because the treatment was effective) then I think she would definately feel better. The Lyme could also be hiding...but again...there was no indication that the treatments were effective....and she's testing bad for them.

If the muscle testing is accurate and she's testing bad for the treatments...I dont think they would have been very effective for her.

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This has been my experience exactly....I learn something from everyone I've seen.

Well...except for the conventional Dr.'s...all I really learned through that heinous experience is that they SUCK!! :P

Well, that goes without saying!!! But, even some of the heinous doctors have said things that in hindsight, turned out to be helpful.

A doctor knows when they are hitting a wall in a certain situation and I doubt he/she would begrudge you getting all the help you need. My naturopath is really hitting the wall with my T3/Thyroid situation and she is told me today that she is out of ideas and to get more help from another doctor.

Nancy

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By the way, reading in the SCD book gave me an insight into this sugar issue. I'd like to know if other research confirms it though. The book said that with the villi damage, not only lactose cannot be digested although that is one of the worst ones. All the enzymes for breaking down sugars and starches are made in the same place, so with villi damage none of that works well. The stomach breaks them down to disaccharides but the villi make the enzyme that does the final breakdown. Going gluten-free but still eating the carbs that cannot be broken down continue to damage the gut and don't allow it the chance to heal to the point it can start making enzymes.

I'm thinking this pretty much makes sense for me. My genotype (double DQ2) is associated with more severe damage and slower healing; even though I don't have terrible GI symptoms, the lab test is pretty clear about the undigested carbs, and it may be a big factor to my remaining symptoms of pain, fogginess and fatigue.

Sherry

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Well, that goes without saying!!! But, even some of the heinous doctors have said things that in hindsight, turned out to be helpful.

Honestly, I cant think of one helpful thing that any one of them might have said to me. I'm telling you...they REALLY sucked! :blink:

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Ok someone explain to me why i can eat potato chips with no reaction, but i get so bloated with potatoes. I also have the worst smelling Bm from potatoes.

I think i know what I am going to be told, it is the MOLD problem that i have. But wouldnt potato chips cause me to react to lol

paula

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Going gluten-free but still eating the carbs that cannot be broken down continue to damage the gut and don't allow it the chance to heal to the point it can start making enzymes.

I remember reading this when I was doing SCD. It doesnt really make sense to me though....mainly because people with Celiac can have completely flattened villi.....total villous atrophy...and yet complete healing takes place from following a strict gluten free diet. Not a carb or sugar free diet....but a gluten free diet.

If its true that eating carbs will prevent healing...then those with Celiac would not heal from the gluten-free diet alone. But typically, follow up biopsies do not show damage once someone is following the diet.

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Ok someone explain to me why i can eat potato chips with no reaction, but i get so bloated with potatoes. I also have the worst smelling Bm from potatoes.

I think i know what I am going to be told, it is the MOLD problem that i have. But wouldnt potato chips cause me to react to lol

paula

Paula....what kind of potatoes are you talking about? Plain fresh baked potato? Frozen? Fries?

No...I wasnt gonna say anything about mold. :P To my knowledge potatoes arent moldy.

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Paula....what kind of potatoes are you talking about? Plain fresh baked potato? Frozen? Fries?

No...I wasnt gonna say anything about mold. :P To my knowledge potatoes arent moldy.

Yep plain baked potatos put in the oven to make french fries with a little olive oil and salt

Yep potatoes are moldy and high in sulphites. Those are the only things i can find about them so far.

paula

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Honestly, I cant think of one helpful thing that any one of them might have said to me. I'm telling you...they REALLY sucked! :blink:

Rachel they told me one thing, not to eat fish. :D

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I remember reading this when I was doing SCD. It doesnt really make sense to me though....mainly because people with Celiac can have completely flattened villi.....total villous atrophy...and yet complete healing takes place from following a strict gluten free diet. Not a carb or sugar free diet....but a gluten free diet.

If its true that eating carbs will prevent healing...then those with Celiac would not heal from the gluten-free diet alone. But typically, follow up biopsies do not show damage once someone is following the diet.

I'm guessing there are more factors perhaps than we know. Because while some on this forum seem to do amazingly well gluten-free, there are numbers that don't improve fully and continue to have some degree of gut issues.

My guess is that it isn't a black and white/either or situation, but that there may be a subgroup that do have trouble with all carbohydrate digestion, not just lactose.

Sherry

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Yep potatoes are moldy and high in sulphites. Those are the only things i can find about them so far.

I've never read anything about potatos being high in mold (well anything can get moldy if its not fresh).

They are also not high in sulfur or sulfites.

Sulfites are a chemical preservative......they are only a problem with preserved potoatoes (to keep them white) which is why I asked what type of potato you ate.

Fresh potatoes do not contain sulfites. Its only the premade or frozen stuff.

It could have been the olive oil or the salt (flowing agents). It could also be natural chemicals that occur when things are baked/fried. I can react to certain things according to how I cook them. If I cook my meat in the oven...I'll react. I've also reacted to potatoes that I baked in the oven for fries...I cooked them too long and they got a little toasty. Almost anything that I overcook I will end up reacting to.

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Rachel they told me one thing, not to eat fish. :D

Well I guess yours were ALOT smarter than mine. :D

I still cant think of one helpful thing they said. I'm truely stumped this time! :mellow:

I could totally provide a super long list of UNhelpful things they told me. Lots of those things are coming to mind....there was no shortage of stupidness thats for sure. :lol:

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My guess is that it isn't a black and white/either or situation, but that there may be a subgroup that do have trouble with all carbohydrate digestion, not just lactose.

I agree with that but I think that the people with carb problems are more likely to have dysbiosis. They have an imbalance in the gut microbes which leads to fermentation. I think the main purpose of the SCD is to try to restore balance in the gut by restricting the foods which feed the bad bacteria/yeast.

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This is the main purpose of the SCD...

The premise of the diet is that damaged intestinal walls and bacterial overgrowth are a part of a vicious cycle that wrecks havoc with the body's health and immunity. The diet restricts the type of carbohydrate that feed these pathogens, thereby restoring the body's inner ecology.

So when a Celiac doesnt really have a problem with dysbiosis they do just fine with the diet. The people who dont heal very well and continue to have problems with additional foods tend to have other issues....whether its parasites, bacteria, yeast or something else. They are just not in balance and they continue to have inflammation....or leaky gut.

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Boy oh boy has it been busy in here this evening! Interesting discussions......

Sherry,

Can't wait for your update!

Totally off topic....

For those interested......T did very well on her test today. The testor was amazed at her reading level....although he did say not to put alot of stock in the grade equivalent.

He said if I were to put her in public school as a 2nd grader this year she'd be bored to tears. :lol: I'm not doing that, but now she's thinking about trying to work harder this year so we can cover 2nd and some of 3rd so we can catch back up to the normal age/grade level. Too much stuff in the new curriculum that she's not familiar with yet to skip onto 3rd grade now.

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For those interested......T did very well on her test today. The testor was amazed at her reading level....although he did say not to put alot of stock in the grade equivalent.

YAY!! Good job T (and Andrea :) )!!

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Carla,

You're going to Germany! YAY!!

I'm back and forth with it almost daily, LOL. Two LN people have returned and neither are doing better than before. Have you read the threads? What do you think?

Ok someone explain to me why i can eat potato chips with no reaction, but i get so bloated with potatoes. I also have

Potato chips were always a great food for me, LOL. They were a great help for an upset stomach. I remember a thread on LN where there were several of us who used them that way.

Regular potatoes were okay for me, but didn't have the same effect as the chips ... something about the grease and salt made them settle better .... hash browns made in a frying pan with lots of oil were good, too.

YAY!! Good job T (and Andrea :) )!!

Yes, YAY, Andrea! And it's great that she's self-motivated now!

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Yup...parasites come from outside the body. But parasites are *everywhere*.....so if the immune system is weakened....it is not able to fight them off. Thats why people with Lyme, heavy metals, yeast, etc....also tend to have a bunch of parasites. One of my Dr.'s told me that we're exposed to pathogens about every 10 minutes. A strong and healthy immune system can fight them all off...a weakened immune system cannot.

Makes sense! :D

No...I never had improvement with parasite treatment....or evidence that I got rid of any alien babies. It would have been nice though. :)

Yea...same for me...the Humaworm actually made me worse for a while. I wonder if its because we pissed off the aliens!?

By the way, reading in the SCD book gave me an insight into this sugar issue. I'd like to know if other research confirms it though. The book said that with the villi damage, not only lactose cannot be digested although that is one of the worst ones. All the enzymes for breaking down sugars and starches are made in the same place, so with villi damage none of that works well. The stomach breaks them down to disaccharides but the villi make the enzyme that does the final breakdown. Going gluten-free but still eating the carbs that cannot be broken down continue to damage the gut and don't allow it the chance to heal to the point it can start making enzymes.

Sherry

What is the name of your book? I think this might be something for me to look into. My digestion is so slow and I think it ferments and feeds yeast causing gut inflammation, bloating, constipation,ect.

Ok someone explain to me why i can eat potato chips with no reaction, but i get so bloated with potatoes. I also have the worst smelling Bm from potatoes.

I think i know what I am going to be told, it is the MOLD problem that i have. But wouldnt potato chips cause me to react to lol

paula

Paula,

Have you ever chatted with Moldlady? She was exposed to mold over a long period of time and being a scientist is very knowledgeable about it. I don't know why you are fine with potato chips and not regular potatoes but in general potatos are avoided on a yeast free diet. The carbs can feed yeast and some potatoes are found to be moldy.

Could it be that your reactions come from building on eachother? Maybe you tolerated the potato chips ok but when you ate the homemade fries....the carbs built up in your system.....

Sometimes it works that way for me. I do okay with 1 bowl of ice cream but then the next day and the next day if I have one...I start getting symptoms.

Try taking your enzymes when you eat foods like that and see if they help. I have to pretty much take my enzymes with every meal.

Could that be indicating that I have villi damage that cannot produce their own enzymes? Hmmmm.....

Boy oh boy has it been busy in here this evening! Interesting discussions......

Sherry,

Can't wait for your update!

Totally off topic....

For those interested......T did very well on her test today. The testor was amazed at her reading level....although he did say not to put alot of stock in the grade equivalent.

He said if I were to put her in public school as a 2nd grader this year she'd be bored to tears. :lol: I'm not doing that, but now she's thinking about trying to work harder this year so we can cover 2nd and some of 3rd so we can catch back up to the normal age/grade level. Too much stuff in the new curriculum that she's not familiar with yet to skip onto 3rd grade now.

That's great news!

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Yayyy andrea and T, that is great news.

April,

That could be it. I think my body can handle things the first time around and then the second time around it freaks out. That is what happened with the beans last week. I also had fried potatos just the night before and did great with them, that is why hubby wanted french fries last night. I need to figure out what i can eat and soon, i cant go on like this anymore.

paula

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Morning everyone!

Paula,

I don't have any ideas about what to take your diet down to to figure foods out for now......sorry. We keep all our meat frozen so we generally don't have problems with that, except for leftovers.......and fresh produce. Have you looked at a mold free diet? That seems restrictive, but they all seem to be.

April,

Do you know if it will take the typical 2-3 weeks before you find out anything about the tick?

Enzymes....something I need to remember to start taking again. I have the unopened bottle in the cupboard. Also need to start my electrolytes.

S is on his second day of weaning. He's been refusing his chlorella and I told him I'm too toxic for him not to be taking them. I was planning on weaning him in the next week anyway before I ramped up on the rest of the supps. So far I've been able to get him to take them once a day. I don't blame him for not liking them.....he chews them. He loved them before though so I'm wondering if this is like the thing with the fish oil that he went through (which Dr E has moved us from). She had said that his body was probably telling him he didn't need it so much. Although, he also doesn't take his vitamins anymore......or rarely. Maybe it's just a toddler thing.

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Yayyy andrea and T, that is great news.

April,

That could be it. I think my body can handle things the first time around and then the second time around it freaks out. That is what happened with the beans last week. I also had fried potatos just the night before and did great with them, that is why hubby wanted french fries last night. I need to figure out what i can eat and soon, i cant go on like this anymore.

paula

What kind of diet are you following...if any....are you doing the candida diet? I think thats what most people do that have mold issues. Because the mold exposure causes the fungal growth in the body among other things. Have you tried a mild antifungal like coconut oil? I wouldn't want to freak your body out especially if you aren't excreting toxins very well. But somehow you have to control the fungus in the body - either through strict diet or semi-strict diet and antifungals.

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