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Omg...i Might Be On To Something


Rachel--24

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Nyxie63 Apprentice

Just a note...

The idiot dr's office just called. Apparently he's decided to grace me with an appointment after all. No answers to any of my questions, just the appt. Am seeing him on Tuesday. I think I'll be channeling my inner biatch that day. It'll be worth the $15 co-pay to give him a piece of my mind...and then some. *grumblemutter*


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confusedks Enthusiast

Carla,

My phone doesn't have an alarm like that...stupid blackberry! It doesn't make noise so if I leave my phone somewhere I'll never know it went off. LOL!

I did find a great spreadsheet that helps me remember. I think I will try to use that!

Kassandra

BTW, I took some advil PM last night....omg, it was amazing! Within 20 minutes I was fast asleep! Tonite I am going to take it earlier, so I can sleep longer. YAY!

rinne Apprentice
Here's some things from one newsletter of Blaylocks.

Excellent information, thanks Andrea.

......

I was trying to answer that first question, and my fingers just won't type it. :lol::P

...

:o:lol:

Dear Everyone,

I will be posting my column later today. .....

I'll be looking for it. :)

All the talk of pies and being a toothpick reminded me that I hadn't told you ... I've gained about 4 pounds since getting rid of that tapeworm! And I'm eating less!

Okay, that's all the weight I want! I fit in my clothes again ... I don't want to have to go buy new ones. ;)

Congratulation Carla, that's wonderful.

All this talk of pumpkin made me realize that I should post my "faux pumpkin pie middle" recipe...

Pumpkin custard

1 can pumpkin

1 can coconut milk

1/4 cup + 2tbsp maple syrup

1 tsp ginger

1/2 tsp allspice

1/2 tsp cloves

1/2 tsp nutmeg

1 tsp cinnamon

pinch salt

Add all to a sauce pot, simmer 45 minutes, stirring regularly so the bottom doesn't burn.

The mixture should darken in color.

Pour into serving dishes, cool & serve.*

*It will set up and be thicker once cooled.

You can also use brown or cane sugar instead of maple syrup. Start with a 1/4 cup and add more to taste.

____

I crushed up Mi-Del Ginger snaps, mixed with almost a stick of vegan shortening and a few tables spoons of sugar, and formed a "crust" and baked it till it just turned brown, poured in the cooled custard and it made a pretty decent pie.

Thanks, this looks delicious and I will definitely try it. :)

Just reading along here, what a prolific lot you are. :P:lol:

Hello to those I don't know. :)

It seems I have acquired partners in my Rinne bar business, I am a little amazed and more than excited at the prospects this opens up. I will keep you updated but briefly they are thinking big and and that means you, the U.S. market. :)

I just need to take a break from eating them. :rolleyes: My new mantra will be "I will not eat chocolate, I will not eat ....." :lol:

AndreaB Contributor
Well, I have the PICC line set up for Tuesday. I have to have a blood clotting test at 10am and then the PICC line insertion will be at 2pm. I have to fast before the blood test and stay on clear liquids and then nothing for an entire 2 hours before the PICC line!! I am so worried I am going to pass out! Yikes...I hope all goes well.

Yay on the PICC line......FINALLY!!!!

I hope you do ok with the fast and clear liquids.

It'll be worth the $15 co-pay to give him a piece of my mind...and then some. *grumblemutter*

Let us know how it goes.

It seems I have acquired partners in my Rinne bar business, I am a little amazed and more than excited at the prospects this opens up. I will keep you updated but briefly they are thinking big and and that means you, the U.S. market. :)

I just need to take a break from eating them. :rolleyes: My new mantra will be "I will not eat chocolate, I will not eat ....." :lol:

Woohoo!!!!! :D

I can't wait.

I can imagine it would be hard to limit them.......but you can do it!

Ridgewalker Contributor

Ok guys, I'm desperate for some help here.

My mom was dx'ed with Celiac over a year ago, but has never really gotten to where she's feeling good. Lately it's been really BAD. Brain fog, edema, and nausea are almost constant. Usually worst in the mornings. She gets glutened every once in awhile, but NOT often. She's had her antibody levels tested, and they have dropped way down into the low-normal range.

She had a hydrogen breath test for lactose intolerance, and it was negative. I begged her to go casein-free, and she did for a little while. She felt a little better, but not totally, so she went back on dairy. She has found that aged cheeses bother her the most, so she has cut those out completely. She's cut back on other things so that she's dairy-light.

This year, she's also had problems with low potassium levels and high blood pressure, both of which she's NEVER had before. She's currently on blood pressure medication, and it's confirmed gluten-free.

The past two months she's had worsening problems with burning pain in her mouth, and dry hoarse throat. When she told me last night how bad it was, I told her how to do a candida spit test, but she was just too brain-fogged and exhausted at the time.

She tried to give blood earlier this week, and they wouldn't let her because her iron was way too low.

So she went to the doc today. (This is our family doc that I'm always bragging on, the same one the boys and I see.) The doctor did a ton of tests for vitamin deficiencies, etc. We should get results next week, but the iron test already confirmed the anemia.

The doc also found a raging candida infection in her mouth and throat. She prescribed a mouth rinse/gargle for it. (But you don't swallow it.) I don't know what all's in it, but it has like 2-4 medications in it.

What I'm trying to get her to do right now is go dairy and soy free, get a sublingual B12 and iron supplements, plus anything else that shows up on the test results.

Any ideas, suggestions?

She's only 51, and has always been VERY active. The past year has been hell for her.

melmak5 Contributor

Ridgewalker - this might not be of any use, but I thought I would share that I tried an over-the-counter product for the yeast infection I got (coupled with a head/chest cold and the digest problems and this rash from hell on my legs... its been a doozy of a week) so the otc didn't work. My dr. called in an rx for the infection and 3 hours after taking it it was like clouds lifted. Granted my cold is on its way out, but I had some energy for the first time in a while. (the fact that I don't want to sit in a bucket of ice is also quite liberating)

My point is here... maybe the yeast is the cause of more than one of your mother's woes and that a gargle might not be enough.

If she can avoid sugars, simple starches, yeast and fermented foods (in addition to maybe an herbal or rx remedy) perhaps she can give her body a chance to fight back and heal. Its just a thought.

rinne Apprentice
......

What I'm trying to get her to do right now is go dairy and soy free, get a sublingual B12 and iron supplements, plus anything else that shows up on the test results.

Any ideas, suggestions?

She's only 51, and has always been VERY active. The past year has been hell for her.

Sounds like excellent advice and a very good start. I tend to think making a few changes and seeing what happens is better than changing too many things at once and having no idea what is working.

I hope she feels better soon. :)


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dlp252 Apprentice

Sarah, it took me quite a few months after going casein free before I saw a real difference. Probably the biggest difference was how much less congestion I had in my chest and head. After being completely casein free for over a year, I just started eating lots of chocolate (with dairy in it), and I can tell you that the congestion has started to come back.

I don't really know how to convince someone else though. Wish I could help more!

Nyxie - give him your money's worth! :P

Kassandra - yay on teh PICC line (never thought I'd hear myself say that to anyone, lol).

confusedks Enthusiast

Sarah,

If you can, post the blood work for the anemia...I have become an expert! :P Make sure if she takes iron that she takes ferrous gluconate, nothing like slow fe...that stuff is crap! Ferrous gluconate is really the best kind of iron you can take. Did you mention B-12? If she can eat any beef that helps with the iron, along with spinach. If it's just her hemoglogin that's low, it's a lot easier to fix. Again, if you can, let me know. Also, make SURE she is taking folic acid with the iron otherwise it will NOT be absorbed at all.

An anti-Candida diet may be a good idea too because it sounds like she has a case of that. If she is anemic, that will cause all kinds of symptoms...it's NOT FUN!!! I get it on a really deep level. The brain fog, exhaustion, hair loss, etc.

Also, I haven't heard of a hydrogen breath test for lactose intolerance...they usually do blood work for that. I may be wrong, but I would definitely suggest she goes dairy and soy free for a couple months to see if that helps. Dairy is one nasty thing! It's also possible that she has the Small Bowel Bacterial Overgrowth. I do still have most of the symptoms regardless of being on the abx, but I also have a lot of other stuff going on. That is tested by the hydrogen breath test, but there are different kinds of those.

Does she have a GI? You may want to go back to the GI because a lot of these sound possibly GI related. I would think try to treat the anemia, candida and see how she feels.

I will post a list of high iron content foods later. I have it downstairs, so she can eat those to help her. I know spinach is one....LOTS OF SPINACH!! I eat at least 3 servings a day!

I hope that helps!

Everyone,

My brother apparently has the stomach flu! AHHHHH! Did I ever mention I am deathly afraid of puking people?!?! We share a bathroom and I am so scared he is going to get me sick. It's funny though because I have been really nauseous the past couple days....hmm. <_<

Kassandra

Ridgewalker Contributor

Thank you everyone, for such quick responses!

My mom and I are extremely close. I think she takes my advice as seriously as I take hers. She is up for trying supplements, but is very reluctant to completely cut out dairy and soy. She loves milk and cheese, and her soy protein shakes.

Kristina,

What was the name of the rx probiotic you took? I, too, think the candida is a major problem for her. I've mentioned it a few times to her over the past 6 or 7 months, before the mouth trouble even began...

Rinne,

Good point. I'm also trying to be careful how I put things across to her- If I overwhelm her with too much, she's going to dig her heals in and not want to do any of it! :P I've seen her do that to her doctors several times...

Donna,

That's really interesting-- when she did cut dairy out completely it was only for about 2 weeks. Even so, when she challenged it, the one really noticeable reaction she had was weird. She had an episode that was several hours long, where she felt like her tongue was swollen, and it was hard to swallow. This made me VERY nervous.

Shortly after that, she had a large panel of allergy scratch tests, including dairy. But the only things that came up were shellfish and cod. :huh: She hasn't had that reaction again since then, but it makes me wonder if it's related to the type of reaction you have with the congestion.

Kassandra,

I didn't know that about folic acid aiding in iron absorption! I found her a good gluten-free multi-vitamin for women that should have folic acid in it. Do you think that's enough? The ferritin test is separate from a regular hemoglobin test, isn't it? They just did the regular hemoglobin, and that is what came back low.

The hydrogen breath test for lactose intolerance is fairly new. Once we read about it, we had to search around for a place nearby that does it. It's supposed to be a lot more sensitive than the blood test.

She has been seeing her GI, but the GI is starting to actually push Mom away, because she doesn't know what to do with her anymore. :angry: The GI keeps trying to get Mom to stick with our family doc. The latest thing the GI has done is rx an anti-spasmodic, which Mom refuses to take because she's not having spasms or diarrhea.... It's simply a constant nausea.

The GI also wants to run a Celiac gene test, because now they wonder if maybe she doesn't have Celiac. :huh: Uhhh... She had a positive blood test and a positive biopsy. WTH???

Also, I talked to her on the phone a few minutes ago and Mom said that the bottle of candida medicine says it's called Magic Mouth... but I can't find anything online about it. And I was wrong, she is supposed to swallow it, after swishing. The only ingredient she could remember was some kind of -statin. I'm going to try to find out more tomorrow, when she's not all spacey on anti-nausea meds.

Thank you everyone, and keep it coming! :wub:

AndreaB Contributor
The GI also wants to run a Celiac gene test, because now they wonder if maybe she doesn't have Celiac. :huh: Uhhh... She had a positive blood test and a positive biopsy. WTH???

Also, I talked to her on the phone a few minutes ago and Mom said that the bottle of candida medicine says it's called Magic Mouth... but I can't find anything online about it. And I was wrong, she is supposed to swallow it, after swishing. The only ingredient she could remember was some kind of -statin. I'm going to try to find out more tomorrow, when she's not all spacey on anti-nausea meds.

Unbelievable! :angry:

As far as statin something......I've read that statin drugs aren't good for you but that may just be the cholesterol thing. I can look through some blaylock reports if you'd like me too.

Ridgewalker Contributor
Unbelievable! :angry:

As far as statin something......I've read that statin drugs aren't good for you but that may just be the cholesterol thing. I can look through some blaylock reports if you'd like me too.

Any and all help is much appreciated! If it's just a cholesterol thing, that's not too worrisome.... her cholesterol has always been good.

Yeah, the fact that they want to do a gene test kind of tells me that they're at the end of their ideas. <_<

aprilh Apprentice
Thank you everyone, for such quick responses!

My mom and I are extremely close. I think she takes my advice as seriously as I take hers. She is up for trying supplements, but is very reluctant to completely cut out dairy and soy. She loves milk and cheese, and her soy protein shakes.

Kristina,

What was the name of the rx probiotic you took? I, too, think the candida is a major problem for her. I've mentioned it a few times to her over the past 6 or 7 months, before the mouth trouble even began...

Rinne,

Good point. I'm also trying to be careful how I put things across to her- If I overwhelm her with too much, she's going to dig her heals in and not want to do any of it! :P I've seen her do that to her doctors several times...

Donna,

That's really interesting-- when she did cut dairy out completely it was only for about 2 weeks. Even so, when she challenged it, the one really noticeable reaction she had was weird. She had an episode that was several hours long, where she felt like her tongue was swollen, and it was hard to swallow. This made me VERY nervous.

Shortly after that, she had a large panel of allergy scratch tests, including dairy. But the only things that came up were shellfish and cod. :huh: She hasn't had that reaction again since then, but it makes me wonder if it's related to the type of reaction you have with the congestion.

Kassandra,

I didn't know that about folic acid aiding in iron absorption! I found her a good gluten-free multi-vitamin for women that should have folic acid in it. Do you think that's enough? The ferritin test is separate from a regular hemoglobin test, isn't it? They just did the regular hemoglobin, and that is what came back low.

The hydrogen breath test for lactose intolerance is fairly new. Once we read about it, we had to search around for a place nearby that does it. It's supposed to be a lot more sensitive than the blood test.

She has been seeing her GI, but the GI is starting to actually push Mom away, because she doesn't know what to do with her anymore. :angry: The GI keeps trying to get Mom to stick with our family doc. The latest thing the GI has done is rx an anti-spasmodic, which Mom refuses to take because she's not having spasms or diarrhea.... It's simply a constant nausea.

The GI also wants to run a Celiac gene test, because now they wonder if maybe she doesn't have Celiac. :huh: Uhhh... She had a positive blood test and a positive biopsy. WTH???

Also, I talked to her on the phone a few minutes ago and Mom said that the bottle of candida medicine says it's called Magic Mouth... but I can't find anything online about it. And I was wrong, she is supposed to swallow it, after swishing. The only ingredient she could remember was some kind of -statin. I'm going to try to find out more tomorrow, when she's not all spacey on anti-nausea meds.

Thank you everyone, and keep it coming! :wub:

Ridgewalker,

Sounds like candida to me. I know it all too well :( . She will probably need an internal antifungal like oregano oil, garlic, or caprylic acid. She may have a hard time if she's not able to give up dairy for its usually feeds the yeast.

Does she have some good probiotics on hand?

Ridgewalker Contributor
Ridgewalker,

Sounds like candida to me. I know it all too well :( . She will probably need an internal antifungal like oregano oil, garlic, or caprylic acid. She may have a hard time if she's not able to give up dairy for its usually feeds the yeast.

Does she have some good probiotics on hand?

I don't think she's been taking a probiotc at all. <_< Every time I've asked her, she kind of hems and haws.... I knew caprylic acid is supposed to be excellent, but I didn't know about the other two!

confusedks Enthusiast

Sarah,

I will tell you what my GI told me about the SBBO, which MAY be a possibility. I actually think that it's very similar to Candida, but more of the "western" diagnosis of Candida. Since I had inconclusive blood tests, the GI is convinced I don't have Celiac. But, she said the reason that I felt better for a while after I started the gluten-free diet is because bacteria *loves* gluten. I know that there is more than just that going on with me...BUT if it were more simple, I think she would have been right.

I think its similar to Candida because it thrives on sugar, yeast, etc. The abx are just a stronger way to kill it off and the die off is NASTY! If she does an anti candida diet...it's really hard. I have never been able to stay 100% away from sugar...I am sugar cane free, but not agave and honey, etc.

I was told to take 2 pills of 400 mcg a day...plus a multi vitamin, but that's a lot. We did that because they want to make sure the iron IV's were absorbed (so much for that! LOL! :rolleyes:)

The other thing about nausea...ginger helps. I know you want to get to the bottom of her symptoms, BUT just so she doesn't have to walk around feeling so yucky, it may help for now. Actually, Pamela's ginger snap cookies are great, but the have yeast and sugar. ;) My Dr. also told me to take 2 prilosec every night before I went to bed because my nausea was waking me up in the middle of the night, that did help. Also, I take Zofran (used for cancer patients before they are given their chemo to help with nausea) and it helps, but it's WAY better through an IV. My point is maybe they will give her something to help with the nausea until they figure out what the problem is.

I TOTALLY get not wanting to give up certain foods, and it actually took me quite a while to give up gluten AND dairy (took even longer) but I now get so sick from it, I almost panic when I think about accidentally having cheese, etc. And all that stuff looks good, but doesn't taste better than I feel without them.

Now that I have given you way more info than you'd ever want to know...lol, I would start with iron, multi vitamin, probiotic and an anti candida diet. I will say though, Iron can be very hard to digest. I would take it at night with something light to eat so she can go to bed soon after.

Finally, Vitamin C is also helpful for Iron absorption. So a spinach salad with oranges? LOL! If you google iron rich foods, you will find some.

So, I know I ranted...but I hope some of the info is helpful. Again, if you can get her lab results...because it can be "easy" anemia...or it can be complicated. When only your hemoglobin is low, its really easy to raise it naturally...it's when other numbers start getting involved it can get trickier.

If they didn't take her ferritin, I would strongly suggest they do. It is usually a test that isn't run with routine labwork. They need to do a hematology work up AND an anemia study which includes iron total, iron binding capacity and ferritin and a couple other things. The only issue with that, is you really need a Hematologist to interpret that because it's not so clean cut...I need 150 points because of my height, weight, etc. but she may only need 50. Do you get it?

One last thing (I promise!) I have a shellfish allergy! I didn't know that until I had allergy testing...but I also don't eat shellfish because I think it's gross...lol. And soy protein shakes although I have never had one, my egg white protein powder is amazing! It's totally tasteless and has really good, high protein and of course free of all allergens.

Kassandra

If you have any more questions...ask away! I hope your mom feels better soon! :wub: It's no fun!!

mftnchn Explorer

Quick drive by, I am able to get online here this time around! But not much time. I did catch up reading.

Yeah, I don't like it, but I've been looking, lol.

LOL, me too.

I bought these little round containers at Michaels craft store.

Great idea, I'm looking for them when I am in the USA to see if they'd work any better than what I have.

I feel the same way. I was nauseated for a long time after seeing the one today ... and, not giving details, but sometimes you can't help but see it. :ph34r: Okay, I'm nauseated again ....

LOL...I can so relate to this. I was traumatized at the idea of going to the bathroom for a couple of days, worried about seeing another one.

I am sure I have passed pieces of tapeworm, but just an inch long. What I saw was so distinctive I wondered so went to google and typed in tapeworm picture...one quick look was all I needed to confirm, and all I could take!!

I am herxing possibly today after the DMPS this week, and worry that the tapeworm all broken up isn't good for mercury release. However, I have also had a very short night of sleep last night.

mftnchn Explorer

Tried something new this week; I went for a massage again, actually twice this week. She told me that according to Chinese medicine the best way to get rid of toxins is to Gua Sha. This is where they scrape your skin.

She put oil on my upper back, and then rub hard on the skin with something with a firm edge (like at home, with the edge of a china rice bowl). If you need this (there are toxins) it will immediately raise up color. You end up with very red/purple blotched skin but not evenly, some places are okay.

Anyway, I decided why not try? It is tolerable, a bit painful. I got immediate color reactions to her first rub. She said it may take several times.

I do wonder if my fatigue today is related, I had this done yesterday. This may have stirred up more than my body can handle, along with the parasites I got rid of with the pineapple/pumpkin seeds.

Nyxie63 Apprentice

Sarah,

The low potassium and high bp sounds like a red flag for aldosterone, which is an adrenal hormone that regulates the sodium/potassium levels in the blood. This can be tested through a simple blood test. She needs to refrain from salt for 24 hours before testing and the test needs to be done at least 2 hours after she gets up in the morning. Along with the aldosterone, renin and electrolytes should be tested at the same time. If these levels are funky, then her adrenals definitely need to be thoroughly checked out.

Kassandra,

Ew! Hope you don't get the flu as well. Just what you DON"T need right now. And just so you know, bacteria looooves iron too.

mftnchn (sorry, I don't know your real name),

Sounds like the toxins are definitely moving out. That's a good thing! :)

Has anyone tried one of those ionic foot baths to help get rid of toxins? I've been thinking about it for awhile and it might be a good idea. Any opinions?

melmak5 Contributor

The probiotic I take is: FloraSMART

it has 8 strains and I picked it because it doesn't need to be refrigerated

I can tell its working because since I have added it back, its gas-city

jerseyangel Proficient

Hi Sarah,

I'm the same age as your mom, I have Celiac and high plood pressure (but normal potassium levels), which is controlled by medication.

I had nausea for months after going gluten-free. I also had severe anemia at the time I was diagnosed. After numerous trips to both my GI and GP, I sought the help of an allergist.

The allergist suggested an elimination diet--it took a while, but I found I was sensitive to many foods--soy, dairy, legumes, coconut, etc. I understand completely your mom not wanting to give up her favorite foods, but it's frequently these foods that we eat daily and crave that we are intolerant to. (not fair! :angry: )

SIBO is another possibility, although I believe the hydrogen breath test can pick it up if they're looking for it--she may want to ask the doctor that did the test about that. I got great results from a round of antibiotics.

dlp252 Apprentice
My brother apparently has the stomach flu! AHHHHH! Did I ever mention I am deathly afraid of puking people?!?! We share a bathroom and I am so scared he is going to get me sick. It's funny though because I have been really nauseous the past couple days....hmm. <_<

I FORBID you to get sick!!! :angry::lol: :lol:

That's really interesting-- when she did cut dairy out completely it was only for about 2 weeks. Even so, when she challenged it, the one really noticeable reaction she had was weird. She had an episode that was several hours long, where she felt like her tongue was swollen, and it was hard to swallow. This made me VERY nervous.

Shortly after that, she had a large panel of allergy scratch tests, including dairy. But the only things that came up were shellfish and cod. :huh: She hasn't had that reaction again since then, but it makes me wonder if it's related to the type of reaction you have with the congestion.

Yep, dairy never showed up on any of the skin scratch tests I had done. The only place it's every shown up was in my BioSET testing and in the Enterolab testing I had done. But sure enough a few months after cutting it out completely I noticed a HUGE difference in the amount of head and chest congestion. I had had continuous cycles of sinus infections for THREE years solid. I'd just get over one and be well for a week, then get another one. I think the dairy contributed to that congestion because after going gluten/dairy free I didn't have another sinus infection until I started cheating with a little chocolate last year (will I NEVER learn, lol--same thing is happening this year).

I really miss my yogurt, so I had thought that maybe after all this time I could have a container or two a week of GOAT or SHEEP yogurt. Um, NOT, lol.

With your mom, the problem may indeed be the casein. I would think if it was lactose the hard cheese wouldn't bother her as much.

As far as statin something......I've read that statin drugs aren't good for you but that may just be the cholesterol thing. I can look through some blaylock reports if you'd like me too.

If it's for the candida, it's probably Nystatin, which is not really a statin drug of the kind that they are talking about I think.

I don't think she's been taking a probiotc at all. <_< Every time I've asked her, she kind of hems and haws.... I knew caprylic acid is supposed to be excellent, but I didn't know about the other two!

Yes, caprylic acid is what I take. If you get oregano oil, get teh capsules as opposed to the drops, lol...the drops are NASTY! Did I mention they were NASTY!? :lol: And Garlic is just a natural antifungal, so it's just good in general for a lot of things.

Tried something new this week; I went for a massage again, actually twice this week. She told me that according to Chinese medicine the best way to get rid of toxins is to Gua Sha. This is where they scrape your skin.

I've actually heard of this and think I may have even seen something on TV about it. Sounds interesting!

Has anyone tried one of those ionic foot baths to help get rid of toxins? I've been thinking about it for awhile and it might be a good idea. Any opinions?

I think a couple of people here have at least looked into them...I think maybe Rinne and Charlie, and maybe Mia, but I can't remember if anyone actually bought one.

AndreaB Contributor
Anyway, I decided why not try? It is tolerable, a bit painful. I got immediate color reactions to her first rub. She said it may take several times.

I do wonder if my fatigue today is related, I had this done yesterday. This may have stirred up more than my body can handle, along with the parasites I got rid of with the pineapple/pumpkin seeds.

This does sound like you stirred things up.

Sounds like a painful procedure. :blink:

The probiotic I take is: FloraSMART

it has 8 strains and I picked it because it doesn't need to be refrigerated

I can tell its working because since I have added it back, its gas-city

Dr E put 3 of us on PB8.....it's not refrigerated either.

If it's for the candida, it's probably Nystatin, which is not really a statin drug of the kind that they are talking about I think.

Yes, caprylic acid is what I take. If you get oregano oil, get teh capsules as opposed to the drops, lol...the drops are NASTY! Did I mention they were NASTY!? :lol: And Garlic is just a natural antifungal, so it's just good in general for a lot of things.

I think you right for the nystatin......didn't even think of that.

Oil of Oregano in the drops is more potent though. I isn't great but I was downing mine with unsweetened cranberry juice. Double bitter!

tom Contributor
With your mom, the problem may indeed be the casein. I would think if it was lactose the hard cheese wouldn't bother her as much.

Also, every aged cheese has enough mold to be a BIG no-no for candida.

Green12 Enthusiast

Rachel, how did your chelation go (that was yesterday right?)

melmak, if you are having a lot of gas after starting up the probiotic I think that's a pretty strong indication that there is gut dysbiosis. I always worked up really slowly with my probiotics, I used a powder formula so it was easy to start off with like 1/8 tsp and see how I did with that. Then after several days with no noticeable symptoms I would go up another 1/8 of a tsp. So, you might want to consider backing down a bit until your stomach adjusts. I don't know if the dosage for your particular product is in capsules, even if it's just one capsule you can break it open and use half or a quarter.

rinne, congrats on the latest with your rinne bar business, that's exciting news! I wasn't around when you were talking about these so I have no idea what they are but I am already interested, I'll buy a case :lol:

Sherry, that massage technique sounds interesting. I would actually love to try something like that (I bet it really breaks up a lot of toxins) but I can't with my angioedema, the scraping would cause my skin to erupt in minutes :( I am interested to hear how you feel after it, if you notice anything in a couple days.

Sarah, I don't have much to add. In my experience most people with auto-immune type situations don't do well with dairy in general. It just seems to wreak havok in the body, causing lots of inflammation and congestion and intestinal/digestive issues. Like Donna, I am so much more clear being off dairy. Oh, and also, my allergy tests showed no reactivity to dairy yet when I eat it I have symptoms galore.

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Nixie, miamia has done the ionic foot baths. There might have been a few other but I can't recall...I have thought about trying one myself, I have a friend who used to do them and she said she felt great afterwards, really invigorated, refreshed, and full of energy. I need to get me some of that :lol:

Where is the befuddled, confused, brain fog emoticon??

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    • trents
      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
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