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Omg...i Might Be On To Something


Rachel--24

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AndreaB Contributor
I know you order from US Wellness meats...do you get their chicken? (Sorry, can't remember, although I know you've mentioned it)... Anna can order their stuff (saves on shipping or something like that).

Yeah, but the eye socket aching started already last night. :( That's a herx symptom when I cut out all sugars.

Yes, I've gotten their chicken. It's very good. I've just found some that's produced in Northern Oregon and I go to a farmers market to get it. It's about $5-7 less than US Wellness and they are raised on pasture and in communities of 200 or less which is what chickens like.

Sorry about your eye socket. That sounds painful. :(

I'm thinking once you get on top of things that you'll be able to eat more without stressing your adrenals.

I went shopping yesterday with T to stock up on food we can start eating today. We are going off of our diet a couple hours early. The older two have lost about 5 pounds this week. For a child, that's not good. T was so happy yesterday during the trip thinking of all she could start eating again. She's been highly emotional lately (even more than normal) so we're hoping that we are starting to get somewhere with these treatments. T and M have a list of dinners they want now that we'll be able to eat more again. I certainly hope that if we have to go through more foods treatments that the list of foods to avoid won't be so long.


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AndreaB Contributor

Rachel,

I'm going to read your post now but just wanted to say I was just going to call you when I finished my post. :) I'm glad you're ok. I figured you were......which is why I didn't call ealier in the week aside from the fact that it's been crazy here W-F with treatments and detox stuff.

Rachel--24 Collaborator

I had my 4th LED Friday....it was for Candida, Aspergillus, Hanta virus and Coxsackie.

I woke up yesterday feeling REALLY good. I dont know if it had anything to do with the treatment or what...I just feel alot better in my head area. :)

I had a long session on Friday....Scott and his friend were ahead of me and I was the last patient so she took her time with me.

She tested various things....making sure I still dont have a problem with sulfa, etc. She never tells me what shes testing so that I dont subconsiously lower or increase my resistance while shes testing. She tested one vial and was like "Woah!".

I knew my body was totally weak to it so I was like "What is that??" :unsure:

It was mercury....she said I must have a huge mercury burden. Now that I've been detoxing some of the other things the mercury is showing up even stronger...its at the root of everything. Since I havent been treated for it yet the other stuff is hung up in the areas where the mercury load is high.

I said "Doesnt everyone coming through here have mercury as a big factor?" She said yeah...they do...along with alot of other things....but the mercury is a bigger issue for me it seems.

Everyone is looking forward to seeing what happens with my treatment next week....Scott is really curious about how I'm gonna do with that treatment.

After this last LED she put me on a liver support cuz she said my blood is pretty toxic...she can see it from the color of my skin and my veins. She said its from the hypercoagulation and from my liver needing support. She also started me on caprylic acid for the yeast.

She tested me on those and had to try a couple things to get the right supplement for liver support.

After she found one that tested well she taught me a method of self-testing. We did the "O-Ring" test. So we practiced with stuff that we knew my body didnt like and stuff that my body responded well to.

This was the second method I've learned cuz the Dr. taught me another way to self-test at my first appt. I'm always practicing with just about everything at home. :lol:

I'm doing really well with taking all of my supplements. I counted yesterday and I'm now taking 25 things!! :o

They're all lined up on the counter so I dont forget about any of them. :)

I have 3 on hold right now....Cumanda, Noni and NDF.

The truelly amazing thing is that I'm taking all this stuff and NOT getting reactions!! :D

My bm's are totally great now...2-3 times a day. :)

I had some burning on my skin and in my mouth a couple times this week....along with some brainfog. I felt like something was moving metals around....I'm taking alot of stuff now so things have got to be shifting. I address those symptoms as if its mercury getting mobilized...just to be safe.

I told the girl on Friday and she said I'm really in tune with my body cuz thats most likely whats going on. As we treat...things will shift and some mercury is gonna be on the move. Also...she said the glutathione I'm now taking could be causing it. I'm pretty sure the glutathione is one of the things really contributing to that.

Overall...I feel like all the supplements are helping me and I'm feeling stronger. :)

So after my last LED I'll see the Dr. again....get retested for everything to see where I stand. She said I'll be starting oral chelation (DMSA). I'll be tested for that....and also cysteine, lipoic acid, etc....and he'll determine the protocol for that when he does the testing.

I asked her about a challenge test and she said he usually does that later on down the road since the results of the test dont change how he's gonna treat me.....and right now we know I'm toxic from mercury regardless....so its expensive and not necessary at this point.

I told her I still wanna get the test just to get a baseline...so I know where I'm at starting out....or how well I'm getting rid of it. So she said they can do that for me if I want.

I feel much more ready for this now than ever before. I feel like my body is doing alot better now and accepting alot more things. My organs are getting the support they need and the testing gives me alot of confidence. I can see that even though I'm not "better"....my body is utilizing the things I'm giving it...to some extent at least. :)

I'm finally graduating to the chelation stage. :D I think the LED treatments and everything this Dr. is doing is definately helping move things along.

Dr. S. is gonna be really impressed next time I see him. He was totally right to hold off on the chelation until I was in a better place and with a good foundation. There is no way I could've just started that type of treatment without doing all these other things first. I would have gotten really sick and I'm glad he could see that I wasnt ready.

I still dont know that I'll breeze through it but I feel confidant that they'll be doing everything to make sure it goes smoothly and that all the bases are covered. Treating the hypercoagulation is important for this too....since thick blood which isnt circulating as efficiently will hinder the removal of toxins.

Hypercoagulation causes a build-up of toxins.

Getting the candida under control also goes a long way in helping the body to excrete the metals. I'm doing really well on my diet (no sugar cravings) and I'm taking the caprylic acid as well as my GSE....plus my "green" probiotics. :)

I havent lost any weight so far!! YAY! :D

Next week when she does the mercury LED they may be adding in Nystatin to my LED treatment. He wants me to get detoxed from that since I was on it for awhile and its a drug.

Thats why they wanted me to find out which antibiotics I was prescribed. I asked the Dr. about it when I saw him Monday....he said that anything "toxic" is gonna get hung up in certain areas and abx do get caught up in those areas.

I told him that originally I had the swelling and imflammation in my sinuses...especially above my eyes. I didnt notice significant swelling in my jaw area until about a year later....and it was during a round of antibiotics. So yeah...the abx contributed to weakening my immune system and allowing for my situation to get worse...and I dont know if the abx got detoxed or hung up with other toxins. <_<

So thats my update. Things seem to me moving along pretty well. I told the girl..."So...I should be eating alot more foods in about 6 months?" I was hoping she'd answer that it would be sooner than that.

She said "Oh yeah...definately...it shouldnt take 6 months though...it'll be much sooner than that."

YAY!!! :D

Rachel--24 Collaborator

Heres some info. on hypercoagulation. I'm pretty sure I've posted some of it before so it might be a "repeat".

Dr. Cheney says that Immune System Activation of Coagulation, called hypercoagulation, needs to be dealt with early on or other chronic fatigue treatments may not be effective.

In hypercoagulation, pathogens and/or toxins activate the immune system to lay down fibrin in blood vessels. The fibrin coats the walls, blocking oxygen and nutrients from getting to nearby tissues. Researchers found 80% of patients with an autoimmune illness had this coagulation.

Pathogens that activate this include viruses, bacteria (mycoplasma, chlamydia, etc.) and fungi (such as candida).

These pathogens are anaerobes, they live in an oxygen deprived environment and are infections common with chronic fatigue. Fibrination helps them survive because it causes decreased oxygen.

Unfortunately, this can cause a great deal of damage in chronic fatigue. Everything from decreased energy to a buildup of toxins and lactic acid in cells.

Hypercoagulation is when the capillaries become coated with fibrin and the blood cannot flow freely. Fortunately, fibrin can be cleaned off artery walls using digestive enzymes.

In addition to the pathogens that can activate the immune system, metals (e.g. mercury, lead, aluminum), exogenous toxins, chemicals, allergens, physical trauma, vaccinations, and/or biological warfare agents can also activate the immune system.

This may lead to secondary infections, which may also trigger coagulation activation. If the coagulation mechanism does not shut down properly, then there is continued thrombin generation and soluble fibrin formation, resulting in increased blood viscosity and decreased blood flow.

Let
dlp252 Apprentice

Oh Rachel, I think that is the most exciting report I've heard from you so far!!!!!! Woo hoo!!!

I'm so glad you are back!!

Yesterday I did not get to comment on your pretty toes! I had so much to reply to, I thought I would do that today. My posts can be too long sometimes for some people, I think. My toes are still bright blue. It looks like I squished a bunch of smurfs and painted them onto my toes! :lol: My mother got us a new polish that is a watermelon pink. I can only put it on my toes, since I do not know if it is gluten-free.

Ha, yesterday I bought a bright orange polish. :lol: Today I added subtle glitter to my flowers. :P

I'm thinking once you get on top of things that you'll be able to eat more without stressing your adrenals.

Yeah me too. Although, it's not a direct result, but the diet takes burden off teh body any my doctor says that each burden you take off of the body helps the body do what it's supposed to. Sugar is HORRIBLE for stressed adrenals though, lol.

AndreaB Contributor
So thats my update. Things seem to me moving along pretty well. I told the girl..."So...I should be eating alot more foods in about 6 months?" I was hoping she'd answer that it would be sooner than that.

She said "Oh yeah...definately...it shouldnt take 6 months though...it'll be much sooner than that."

YAY!!! :D

The whole report is great news!!! :D

I'm so happy for the progress you've seen.

Rachel--24 Collaborator
The whole report is great news!!! :D

I'm so happy for the progress you've seen.

Thanks Donna and Andrea. :)

I'll be taking a weeks vacation following my mercury LED....so I'll be having some time to chill out. :)

I havent taken my last two scheduled weeks off cuz my boss didnt want me to go and I didnt have plans....so they keep getting postponed. :rolleyes:

I wanna make sure I get some time off while its still summer so I'm going after my last LED treatment FOR SURE!! :D


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covsooze Enthusiast
Hello again everybody,

I don;t know if anyone has any experience with this, but all of you are so knowledgeable so I thought I'd give it a shot. I am absolutely exhausted and have no idea why. I had allergy testing and found out I am SEVERELY allergic to grass of all kinds. I am now taking Nasonex (nasal spray) to help with that, but it's not really helping much. I live in LA and grass is everywhere, especially Bermuda grass which is what I am a ten on a scale of 1-10. It doesn't seem to be food-related, but I have no idea what it is then. I also have developed what my doctor thinks is acid reflux, pretty bad. I wake up about every other night with SEVER nausea. I start sweating, lose ALL color in my face, the room starts spinning, etc. I am now taking 2 prilosec before bed. I am just exhausted. I feel like I felt when I was really anemic, but I am pretty sure I'm not anemic again. I guess even if nobody has ideas, I just need to vent. This is horrible, I have less energy than my almost 50 year old mom who only sleeps about 3-4 hours every night. I am also getting a lot of sleep, average of 9-12 hours a night. I start school again on Wednesday and I have NO idea how I am going to make it through a school day. Any ideas/ suggestions/ thoughts are greatly appreciated!

Kassandra

I hope everyone is doing well around here.

Hi Kassandra

I really feel for you as bad reflux is truly horrible. And there are so many different things that can cause it. I guess your dr has probably given you the talk about avoiding stress, not smoking, avoiding fatty foods, taking exercise etc Are you also being tested for h pylori, as that's a bug that often causes reflux and ultimately ulcers?

Reflux has been/ still is to an extent a big problem for me and for DH. The sever reaction you describe is just how I was before I was diagnosed with coeliac. In fact, a really sever instance of it is what landed me in the ED and led eventually to my diagnosis. So gluten can be a cause.

There are also lots of foods that commonly cause reflux (sorry if you already know all this) - common are tomatoes, citrus, tea, chocolate, onions, spices. All these things do cause me and DH problems. But it's not just those things, I think probably any intolerance could do. Bananas do, and nuts. By far the worst for me is pepper and chilli.

But another thing I've realised is that once my stomach has been damaged by something, it becomes sensitive to a whole lot more stuff and also more sensitive to the things that usually cause me problems.

What helps: well, attempting to eliminate the culprits; sleeping enough; exercise (even a short gentle walk); raising the head of the bed; and, what I'm drinking now: fennel tea.

I hope that helps some. Sorry if it's repeating stuff you already know. Please do pm me if you want to ask me any more. I hope you start feeling better soon.

Susie x

covsooze Enthusiast

I just reread over posts and hit the quote button so I could respond to the points I wanted to and it hasn't worked, so sorry if I get muddled as to who said what!

Donna, you've won! I had peanut butter! :ph34r: But peanuts are not really nuts right?! I didn't realise it wasn't allowed on the anti-candida diet and that it can be really moldy. So thanks for that info Jin.

Also, the limit on carbs. That's impossible! I would be so skinny within a week that I'd break in two! That is my problem with this whole eating healthily thing, I need cakes (gluten-free of course!), cookies and chocolate to maintain weight! That's on top of at least 2000 calorie a day of healthy food. Clearly absorption is a problem for me lol so hopefully this mad diet will help with that.

Anyways, the good news is that I still haven't eaten any potatoes. Yeay! :D And I think from the way I feel this evening that I'm herxing, so I guess I'm on the right track.

Andrea - sorry to hear the kids have lost weight. I hope they enjoy their food tomorrow :)

Rachel - good to hear your feeling so positive. Very interesting info about hypercoagulation.

Susie x

AndreaB Contributor

Well, we are having rice for lunch and treats to follow. S is soooooooo happy as well as the other two. I certainly hope they cleared the foods and we don't have to go through this again. I'm not willing to have them loose that much weight again......nor my hubby.

dlp252 Apprentice
Thanks Donna and Andrea. :)

I'll be taking a weeks vacation following my mercury LED....so I'll be having some time to chill out. :)

I havent taken my last two scheduled weeks off cuz my boss didnt want me to go and I didnt have plans....so they keep getting postponed. :rolleyes:

I wanna make sure I get some time off while its still summer so I'm going after my last LED treatment FOR SURE!! :D

You're welcome! Sounds like a great plan with the weeks off...yeah, you may NEED a week off after the mercury treatment. :P

I don't know if you're planning to go back to read what happened in the last few days...did you see that my house DOES have mold, but it's not in the bathroom, and the only thing that ws found was candida! My house has candida. :lol:

Unfortunately, the living room is a 10 on a scale of 1-9. :( They consider that hazardous. :ph34r:

Donna, you've won! I had peanut butter! :ph34r: But peanuts are not really nuts right?! I didn't realise it wasn't allowed on the anti-candida diet and that it can be really moldy. So thanks for that info Jin.

Yep, peanuts are not technically nuts, lol, but they are among the worst for mold. I've still got a little almond butter in my fridge and have been thinking about it for the last 15 minutes or so, lol. I just had a nice big steak, so it's not hunger, it's more that strong desire for sweetness, lol. Stupid mold.

Well, we are having rice for lunch and treats to follow. S is soooooooo happy as well as the other two. I certainly hope they cleared the foods and we don't have to go through this again. I'm not willing to have them loose that much weight again......nor my hubby.

Oooohhh, rice sounds so good. :P

Rachel--24 Collaborator
I don't know if you're planning to go back to read what happened in the last few days...did you see that my house DOES have mold, but it's not in the bathroom, and the only thing that ws found was candida! My house has candida. :lol:

Yikes! :o

So the bathroom tested normal?? Where do you have the biggest mold problem and what do you think is causing it? :huh:

Donna...so does this mean you got candida from your house...or vice versa?? :unsure:

Maybe you can put your house on the diet. :lol:

dlp252 Apprentice
Yikes! :o

So the bathroom tested normal?? Where do you have the biggest mold problem and what do you think is causing it? :huh:

Donna...so does this mean you got candida from your house...or vice versa?? :unsure:

Maybe you can put your house on the diet. :lol:

That's EXACTLY what I said...I'll put my house on the candida diet, lol. Then I think it was Carla who said I should sprinkle the powdered Nystatin on it. :lol:

Their reference range is:

1-4 = within normal range

5-8 = cause for concern

9 (or more) is hazardous (illness likely)

My bathroom and kitchen were both only a 1 !!!! :o

My bedroom was a 2!!

My LIVINGROOM is a 10!!! :o

I put the test plate on the small coffee table I have right by the couch...that's where I spend all my time, so figured that was a good place to test. It's got to be in the carpet and curtains. The carpet is more than 20 years old. I've been here 19 years and it was here when I moved in. My curtains have been in since I moved in. So I'm pretty sure that's it. Dr. S was right on when he said I should get rid of the carpet immediately.

Still, my bedroom has the same carpet, so I think it's the moisture downstairs. I've had dogs, and who knows what the people who lived here before had (it was a rental unit). I know personally, I've spilled lots of stuff on the carpet, dogs peed, and there's all the stuff I've used to "clean" it. Since I spend more time down here, there's been more "action" on the carpet down here.

So, I think I've got my priority for work...if the mold is in the bathroom, it's apparently not causing much of a problem, so I can leave it there for a while, but got to get rid of the carpet as soon as possible. Not sure how I'm going to accomplish that just yet, but have a couple of ideas.

confusedks Enthusiast

Where did you get the testing kit for the house candida?

Kassandra

mftnchn Explorer

Kassandra, I have also had a huge problem with grass allergy in the past. And I can't tolerate antihistamines well, they cause insomnia for me. Actually I am also allergic to some trees, many weeds, grasses, dust and mites, dander, cockroach :ph34r: , and some other things I can't remember right now. I have a great allergist and have been on weekly shots for years. He uses a low dose approach for me, but it really works. I am also on a mold shot that helps now, I couldn't tolerate it for many years. The shots work like vaccinations but the low dose approach means I have to stay on them. Over the years I have become less reactive to many things using this approach.

NoGluGirl Contributor

Dear Carla,

I think bacterial dysbiosis is a good possibility for me. Even though I take probiotics, I have Candida. Plus, you were on probiotics like crazy, and were sick from it. There are a lot of possibilities here. Lyme contributes to much of it.

The other day, I ate like a whole clove of crushed garlic to make garlic bread. I was sick for two or three days with stomach cramps! I bet it was killing the yeast and bacteria, maybe. I was very sick. I would breakout in a sweat, and have to have a bowel movement, and had terrible cramps. :( They were similar to the ones I had before getting my gallbladder removed, but were not quite as severe, thank goodness.

Dear Donna,

Glittery flowers are awesome! I am trying to get some time to design stencils for mine. They had these neat pens out for that, but I have not seen them in a long time. Maybe they stopped making them. :( I have not gotten to play with glitter yet.

One thing with the glittery polish is, they tend to be difficult to remove.

I know what you mean about the sweets. Craving them is so difficult to deal with. It drives you crazy. All you think about is a brownie or something. Candy bars are also in front of you plenty. This can be quite distracting.

You can sit there and try to work, but chocolate keeps popping back into your head. Nothing can be done. This occupies your mind. It is bad for your adrenals, and I am sure mine are exhausted. That still does not make it any easier to stop eating it, though!

I am sure you will figure something out for the condo. All of the mold is not where you expected. Candida in the carpet is new to me! I had no idea it could survive outside of a living organism. I thought it had to have a host. Isn't it considered a parasite?

Dear Rachel,

Your report is so encouraging! :) This is wonderful news! I am so glad you are doing well with this! Just think how great you will feel after getting rid of the mercury! LED number 5 is for that! It is already about five days away!

I bet I have hypercoagulation. I was told I have Fibromyalgia six years ago. I bet I do have it. You are onto something. I would not be surprised at all if fibrin caused difficulty in producing antibodies or hid them. Impairment of the immune system is a likely result of this being in the blood.

The scientificness was great! :) I was glad you came back! I was concerned my brain would completely turn to mush without your scientificness to keep my brain working! :lol: You use it, or lose it, you know? ;) I still need to copy the information and save it in a document.

The accupuncture will help you a lot, I am sure. There is so much it can do! I am amazed at Chinese medicine. Western medicine is quite lacking in a number of aspects. They do not treat the whole person, which is extremely erroneous.

Dear Andrea,

I am glad you all will be able to eat some more foods now! The children will put that weight back on in no time! That is awful they lost five pounds! :o Thank goodness they can eat tastier stuff again. Children need to hold their weight.

Dear Susie,

You are so welcome for the information! Yes, you are right. Peanuts are actually legumes. So, if you do not tolerate soy or beans of any kind, you may not tolerate peanuts either. The natural molds are also a big problem. Rachel told us about how the natural aflatoxins in peanuts actually cause cancer in peanut farmers.

I am prone to reflux as well. I have not tried fennel tea. Maybe I should. I tried cutting out caffeine, chocolate, coffee,

soda, citrus, tomatoes, and everything else, but it did me no good. I could drink water and get reflux. :( I still cannot take mroe than a few sips at a time without suffering for it. I have to drink small amounts at at time.

Congratulations on potatoes! I love them. I really need to stop eating them, but they are healthier than sugar, and help keep my glucose stable. The limiting carbs thing does appear impossible for me as well. Plus, most of those high protein diets make you lost muscle, not fat.

Dear Sherry,

I used to take allergy shots. I had to go off of them, though. They started making me mean. I also could not take Polyhistine because it made me violent when I was only 7 years old. I get hyped up on some of the newer meds. Claritin D gave me insomnia. No more of that!

Sincerely,

Jin

mftnchn Explorer

Rachel, that's great news.

Andrea, this has been a rough time for all of you, I hope there is good benefit and that the kids regain their weight and energy soon. Five pounds seems dangerous in little ones.

mftnchn Explorer

Carla, glad to hear the herx is better. Yes, that could be what is going on for me. For this next week I am going to drop three things I most recently added, and see if that helps.

Rachel, all your bottles lined up sounds like me. I have the pills all put out in a pill box for morning noon and night for the week. But there are things I can't put in there. Either they are in the fridge, or they are powders, or they have to be eaten at a certain time before the meal or whatever. I have been trying to get into a routine, but found I didn't remember--did I take that already or not???

So I made some little check off lists, it fits four copies on a page. I have one that works for most days, and then another that works during the week I take DMPS and have to skip minerals. I am going to try this for a few days and see if it helps.

dlp252 Apprentice
Where did you get the testing kit for the house candida?

I ordered from a place called immunolytics...I don't have the website linked here at home, so I'll have go post it from work. Scott the Betterhealthguy (I think www.betterhealthguy.com) also has it lised on his mold page. It wasn't cheap...5 plates cost $175!! One of them was damaged in shipment so I only used 4.

One thing with the glittery polish is, they tend to be difficult to remove.

Oh yead, definitely...hate taking it off, but I like the way it looks. These are subtle glitter...they're in a clear tinted polish, so it's not overpowering...may get some of the overpowering ones too though. :lol:

So I made some little check off lists, it fits four copies on a page. I have one that works for most days, and then another that works during the week I take DMPS and have to skip minerals. I am going to try this for a few days and see if it helps.

Yeah, I've done this too but keep forgetting to check them off, lol. I've got all my bottles lined up on the counter, and all the ones that require refrigeration on one shelf in my refrigerator.

CarlaB Enthusiast

Rachel, I'm glad you're seeing such improvement.

Donna, my toenails are still plain purple ... I painted them red a couple weeks ago for a change, and even Adam said it was boring!

Sherry, hope you're feeling better soon. I thought I was pulling out of this herx, but I'm still wiped out from it ... not hurting anymore though, just overwhelmingly fatigued. I slept for 2 1/2 hours this afternoon.

I have my bottles on trays ... if they were lined up, I think they would go all the way around the kitchen, LOL. Mine has gotten complicated and if I don't wake up in the middle of the night to take the NAC, then it's nearly impossible to take everything!

Last night, I forgot the NAC ... I had dusted the blinds that afternoon and ended up having to take some Benadryl several hours later when I was still sneezing ... Benadryl actually works better for me for sleep than Ambien! So, I slept well ... I did wake up once, went to the bathroom, then went back to bed ... I am pretty sure I forgot the NAC. I'm not going to take the Benadryl for sleep though, because on the occasion I need it for my sinuses I want it to work.

Come to think of it ... yesterday I was doing fine until I went to the pool and got some sun. It wiped me out. Today, we went to Starbucks after church like we always do, but it was packed, so we sat outside in the sun ... I bet that's why I'm so wiped out today ... I felt fine this morning and even played my flute at Mass. I'm going to stay out of the sun tomorrow and see how I feel.

NoGluGirl Contributor

Dear Donna,

I love the sheer ones as well. We have a nice pearly white one with glitter. It is so pretty! I also like some of the wild colors. I would love all of the Psychedelic Summer colors OPI has. They have a pretty purple and white in particular that I know you would totally go for!

Dear Sherry,

Herxing could be what is going on. I would not be surprised. The symptoms you have sound pretty similar to some of Carla's. Everyone is a bit different though. Some people have fatigue more than others, for example.

Supplements are difficult to keep track of. I make a little medicine log. That really helps a lot. I say go for it! Maybe you could put a reminder on the fridge like a sticky note to remember the others. Even have a friend call and remind you to take them if need be.

NoGluGirl Contributor

Dear Donna,

I love the sheer ones as well. We have a nice pearly white one with glitter. It is so pretty! I also like some of the wild colors. I would love all of the Psychedelic Summer colors OPI has. They have a pretty purple and white in particular that I know you would totally go for!

Dear Sherry,

Herxing could be what is going on. I would not be surprised. The symptoms you have sound pretty similar to some of Carla's. Everyone is a bit different though. Some people have fatigue more than others, for example.

Supplements are difficult to keep track of. I make a little medicine log. That really helps a lot. I say go for it! Maybe you could put a reminder on the fridge like a sticky note to remember the others. Even have a friend call and remind you to take them if need be.

Dear Carla,

I bet the sun did wipe you out. I get like that, too. I get worn out if I stay outside very long. That is good the allergy medication helped you sleep. A lot of people take it for that alone. It helps RLS.

Sincerely,

Jin

tom Contributor
I just reread over posts and hit the quote button so I could respond to the points I wanted to and it hasn't worked,

Hmmm 1st guess maybe u hit a regular [add reply] button (after hitting

however many times, of course) instead of the bigger [ADD REPLY] button at the bottom, under all the posts?
mftnchn Explorer

Thanks, I seem to be feeling better today which is good because I am leaving tonight on my trip for the rest of the week. Perked up after taking Allegra this morning, which might be a sign that the fatigue is due at least partly to asthma. Abdominal issues seem to be improving again now.

Overall I am still doing well, because the brain fog hasn't hit too much, so I have kept working and have actually gotten a lot of work done this week. Its just that this week I feel like I am pushing myself all the time to just stay at it--there's always this nagging "I'd sure love to go veg out" feeling, plus the nausea, bloating, and diarrhea (amazing for me who has always had the big C).

Have a good week everybody.

confusedks Enthusiast

First, thank you for all your responses.

What type of allergy testing did you have? If you didn't have IgG testing then it won't really tell you much. IgG testing is the delayed reaction.

AndreaB, I had the skin-test ones. It said I have an allergy to olive trees, cockroach, and shellfish! (It's a good thing I don't like shellfish! :huh: Now I am afraid to eat it to see what happens!!! :unsure:

I started seeing some doctors (I refer to them in my posts as the HN doctors), who did some better testing and found that my adrenals were exhausted. That was pretty much a given, but was glad they did the testing. They found a lot of hormones and body functions out of whack.

dlp252, Who are these doctors? Where could I find some in my area?

The breaking out in a sweat, nausea, and acid reflux are all too familiar to me. I began getting it at about your age. I have to take twice the dosage of Prilosec as well. My low blood pressure tends to make me feel weird. I do not exactly get dizzy, but have the feeling of nearly passing out frequently. There are times I can stand up or stretch and begin to blackout.

NoGluGirl, Ugh! You said it perfectly. My blood pressure is really low at times also...we don't know what that's from?! Any ideas?

I am always tired it seems, too. I get so exhausted sometimes. No matter how much sleep I get, I feel like I have been hit by a train. Lyme can cause this, as do many of the co-infections associated with it. I went through school feeling like this at your age for a while. Eventually, it got to the point I could not go to school anymore. Later, we found out my gallbladder went bad. Are you getting any pain in your right abdomen below your ribcage?

Me too! I don't know about the pain below the ribcage stuff. I'll try to take note of where the pain is. I'm just so frustrated because everything I eat is making me feel sick! We ate sausages and salad tonight and I was so pale and nauseous! I can't stand it.

I have also had a huge problem with grass allergy in the past. And I can't tolerate antihistamines well, they cause insomnia for me.

mftnchn, My allergist doesn't want to do allergy shots, I don't know why. I wish I got insomnia so I could stay up and STUDY!!! Lol! (I don't really want insomnia, but I sleep so much, I can't stand it!)

First I would get tested again for anemia, including B12. I take Blood Builder, which is a complete supplement for the blood. It helps me a lot. It has both iron and B12, plus folic acid and vitamin C ... with other whole foods. Google it if anemia is your problem.

The other thing that comes to mind (besides Lyme, which is always in my mind, but I know not everyone has it, LOL) is thyroid ... also candida.

CarlaB, Ok, so I have a question...I once had ringworm, could one get lyme from that? I am worried about that. How would I get tested? Thank you for the supplement name, I will look into that if anemia is the problem. We don't think it is because I have great color and I used to be REALLY pale! I have a tan for the first time in many summers.

I have thought about candida, but I am struggling with the sugar cravings!!! I know that is par for the course, but...UGH! I'm also afraid to start a anti-candida diet because school is starting and the last time I did it I was tired for days on end. So I don't want to start that now.

I have another question, I saw you posted somewhere that you take oil or oregano. I took it today because my mom suggested I try it and I fell asleep like 30-40 minutes later. Is this normal?

I really feel for you as bad reflux is truly horrible. And there are so many different things that can cause it. I guess your dr has probably given you the talk about avoiding stress, not smoking, avoiding fatty foods, taking exercise etc Are you also being tested for h pylori, as that's a bug that often causes reflux and ultimately ulcers?

I am 17 and don't drink, smoke, etc. I do exercise, but it only makes me more tired! I have not been tested for H Pylori, but I will talk to my doctor about that. I think I may have a stomach ulcer, because my pH levels are really high! I need to check into that.

Again, thanks for all the suggestions and ideas. Anymore ideas would be great! Thanks again!!

Kassandra

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    • knitty kitty
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    • cristiana
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    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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