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Omg...i Might Be On To Something

Rachel--24

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jerseyangel Proficient
jerseyangel
Posted

I have just put in a call to my allergist re--this medication. To be honest, I don't hold out much hope he will prescribe it for me, but I will give it a shot--nothing to lose!! I do respond to antihistimines--not just for the seasonal allergies (only 2 weeks out of the year for me, no big deal) but they have always had a calming effect on my stomach. That's why I took them for 12 years--and I'm back on them now. This is exciting, my next step will probably be finding someone who will prescribe it for me. This would explain why the Claritan had some effect on my stomach issues--kept them at bay most of the time until Celiac kicked in majorly. Thanks again, so much, Rachel :D

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AndreaB Contributor
AndreaB
Posted

Wow Rachel, thanks for all the info.

I feel like I've gone thru a class now. :D:P:)

So good to here that this will help you and many others who learn about it and can get it prescribed (like you Patti :P )

Question for you gals...what about probiotics. Good, bad or indifferent?

jerseyangel Proficient
jerseyangel
Posted

Hi Andrea :D I only tried probiotics once. I used Culturelle. By the fifth day, I was so nauseous I had to run out of a store because I thought I was going to be sick right there! I did a little digging, and learned that people who were sensitive to lactose may be affected. So I stopped taking it, and am frankly afraid to try probiotics again. I know, though, that a lot of people take them and do very well.

christine 25 Newbie
christine 25
Posted

Andrea, I am from the east coast was born in Boston lived in NH, and ME.

I've lived in Columbus, OH, now for the past 6 years. I wish I lived in CA, the weather is nice, now its pretty hot tho!

Rachel,

I read your post about the drug, that rocks that guy was so helpful with you and informative and has personal experience that is hopeful. Having hope really helps the healing process.

I am slowly, feeling a little bit better, I think I got glutened severly a coupple days ago, and its going to take time to get out of my system.

The bitter taste buds is slowly going away.

All this time Ive been suspecting ezymes play a huge part in my illness. Ive been reading a lot about enzymes and the breakdown of proteins, and how without the correct enzymes, or if they are not functional then the body can create a build up of mucus and sticky proteins that arent properly digested and damage occurs to the body, joints, bones, skin, oand organs such as heart, lungs, brain, stomach. There is some genetic testing they do for enzyme assays, to see if you lack certain ezymes and I was thinking about getting it done to see I have this problem now,

They do it at the childrens hospital here in town, and I talked with the genetics counselor therem she said that usually inherited and not aquired, but she said that they test adults also, I would have to get my doctor to get on board, because I need a doctors reccomendation for testing. Im switching doctors right now cause im really stressed.

The other intesting thing is that before I was normal, 2 years ago I had a really bad reaction after taking several trace mineral supplements from a local health food store, I took 4 different brands before becomming pretty ill.

It turns out the supplements do contain a lot of heavy metals, and arsenic, cadmimum, lead, mercury, etc. as they are organiclly derived from coal, and bound to carbon and sulfur, and I was being poisined by them. I was always really sensitive to meds before, now I am superhypersenitive. The supplements have a known effect of undersibly stimulating the immune system. I have never been the same since and thats when all this mayhem started.

I know that consuming that stuff is what triggered my symptoms, even if somthing was underlying or not, ie gluten intolerance, it came out of the closet after that.

So about the enzymes I have read that metallic metal ions can interrupt the ezymes in our bodys so ive been looking a lot into that.

heres some info I read about on dartmouth toxic metals research program.

What are toxic metals?

"Many metals have no known biological function and some of these are capable of disrupting essential physiological processes. Examples of this are cadmium, lead and mercury. Other metals in the wrong form can be toxic. For example, chromium as the Cr+3 ion is an essential trace element important for maintaining correct blood sugar levels, but as the Cr+6 ion is a known human lung carcinogen.

---How can metals harm living things?

The toxic effects of most metals can be traced to their ability to disrupt the function of essential biological molecules, such as proteins, enzymes and DNA. In some cases this involves displacing chemically related metal ions that are required for important biological functions such as cell growth, division and repair.

Biological molecules have specific structures and certain components that are essential for their roles. For example, a protein is a specific chain of amino acids that folds into a unique three-dimensional structure. If this structure is altered or a specific part of the protein becomes damaged, then it may no longer be able to carry out its necessary role.

Proteins, in particular, play an astounding number and variety of roles in living organisms. They are used as structural elements, for sending signals both within and between cells, and as enzymes for the synthesis and degradation of other biological molecules. If a metal ion binds to the amino acids of a protein, the resulting metal-protein complex may lack the protein's original biological activity.

For example, certain enzymes contain a cysteine amino acid that contains a sulfur atom necessary for its function. Certain toxic metals have a high affinity for sulfur and will bind tightly to the essential cysteine, inhibiting the enzyme from functioning.

One metal may also substitute for another similar metal. For example, the toxic metal, cadmium, can substitute for the essential metal, zinc, in certain proteins that require zinc for their structure or function. This can lead to alterations in that protein that can have toxic consequences. In the same way, lead can substitute for calcium in bone, and in other sites where calcium is required.

Metal ions can also remove an electron from the amino acids of a protein in a redox reaction that disrupts its ability to carry out its biological function. Metal ions can also remove an electron from the bases of DNA. Such oxidative damage to these biological molecules is implicated in the cumulative effects associated with aging and in the mutations associated with cancer.

In some cases the disruption of a few biological molecules has an amplified effect. One example is the transcription factor proteins that, in response to a signal, bind to DNA and initiate the synthesis of new proteins required for development, normal cellular metabolism or response to some stress. Another example is enzymes, the biological catalysts that are needed in only small amounts but which play essential roles in all biological processes. A third example is proteins that are involved in the repair of damage to biological molecules. While most damaged proteins are simply replaced, DNA must be repaired if the information in an organism's genome is to remain intact. Disruption of DNA repair leads to propagation of errors in an organism's blueprint."

As you can see this is kind of overwhelming, I have to get a good doctor who knows about envirnonmental toxicity and diet etc. Most of the doctors on Bio heatlh's website have somehow been poisoned by their enviroment and sucuessfully recovered, incluing the founder, dr. Timmins.

Hopefully I can figure this out and get some answers for myself.

Christina

AndreaB Contributor
AndreaB
Posted

Wow Christina that all sounds so complicated.

I have mercury amalgams so I know I have lots of mercury in my body. I had a hair analysis done which isn't very accurate in nailing metals. I forget what all it said. I was higher in arsenic. My hair levels didn't even have b12 so the doctor gave me a shot of b12 and I came home with some of the same. I had my blood levels tested and they were fine. I had started eating eggs before that and I don't remember if I had started back on meat or not. My blood levels were normal. I would love to have the amalgams taken care of but out of the six I have left, 4 more need to be crowned. :o Money, money, money, we are out of, out of, out of. :ph34r:

jerseyangel Proficient
jerseyangel
Posted

My Allergist just called me back! He is familiar with Ketotifen, he says that it's used for asthma primarily. I told him why I wanted to try it, and he said that although he didn't know if it would help me regarding my damaged intestine/food intolerance, it was a safe drug and it wouldn't hurt for me to try it. Now the bad news--under state law, he can not prescribe it :( He said that laws vary from state to state, and I might try to go through a pharmacy in Canada. I wonder if those are safe? Actually, after speaking with him, I'm really wanting to try this.

dlp252 Apprentice
dlp252
Posted

Christina - wow, that is overwhelming but very interesting! Thanks for posting. I'm glad you're feeling better!

Andrea - you and me both with the fillings. I had 11 at one time filled when I was around 13. Even my front tooth is filled. :o As an adult I've had to had about 3 of them replaced for one reason or another and I wish at the time I knew about the toxicity of them. Course, I don't think my dentist would replace with anything else, so not sure what good that would have done anyway. I've always wondered if these stupid filling have anything to do with my body not quite functioning right.

Patti - hope you can get that worked out with the place in Canada...I'll have to ask my allergist at my next appointment. I think I'm due soon for a "shot check", so I'll try to remember to ask her then.

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Most of the doctors on Bio heatlh's website have somehow been poisoned by their enviroment and sucuessfully recovered, incluing the founder, dr. Timmins.

Both Dr. Timmins and his son had undiagnosed gluten intolerance which led to a decline in health problems for both of them. It took more than just eliminating gluten for them to get better though but that seems to be the common denominator in all of these people who ended up with environmental illness. Essentially they were poisoned by gluten and unaware of the damage occurring until it was too late. Dr. Timmins suffered severe chemical intolerance. Just like the pharmacist I spoke with today he is very passionate about gluten intolerance since its something he himself has suffered from.

Christina, are you on gluten free diet now?

My Allergist just called me back! He is familiar with Ketotifen, he says that it's used for asthma primarily. I told him why I wanted to try it, and he said that although he didn't know if it would help me regarding my damaged intestine/food intolerance, it was a safe drug and it wouldn't hurt for me to try it. Now the bad news--under state law, he can not prescribe it :( He said that laws vary from state to state, and I might try to go through a pharmacy in Canada. I wonder if those are safe? Actually, after speaking with him, I'm really wanting to try this.

Jersey,

I wonder if he's aware that its now been improved for compounding in the US. It was an MD from the clinic I go to that perscribed it to me. He should be able to contact them and write you a script. Not totally sure how the whole process works. I can pm you the info. for the pharmacy and if you want you can talk to them and see how you can go about getting a script. My doctor is just a regular doctor though....she trained at Kaiser but now works with HealthNow.

mouse Enthusiast
mouse
Posted

Rachel, I wrote down the name of the drug you have started to take. My GP will send someone to a compounding pharmacy that is located about 30 minutes from me. I know you have told what this is expected to do for you, but could you clarify for my pea brain. Would this drug help calm my allergies so that I can eat out again. I am still going to not cook with anything that has soy, corn and dairy. Thanks for the information. What would we do without your knowledge and research.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I talked with the genetics counselor therem she said that usually inherited and not aquired, but she said that they test adults also, I would have to get my doctor to get on board, because I need a doctors reccomendation for testing. Im switching doctors right now cause im really stressed.

Enzyme deficiency *can* be aquired.....a perfect example is when a Celiac is diagnosed most have lactose intolerance due to the fact that the damage from gluten has wiped out the production of the enzynme required in digesting lactose. This can happen with fructose and pretty much all other foods....the intolerances come from the bodies inability to properly break down and digest food.

Sometimes enzyme deficiency can be present at birth which would be more of an inherited problem but with gluten intolerance the lack of enzymes is a direct result of the gluten intolerance. In that case the genetics have everything to do with the gluten intolerance but not the enzyme deficiency because with healing the enzyme production can and does increase.

Also, as we age I believe enzyme production can slow down.

jerseyangel Proficient
jerseyangel
Posted

Rachel--I told him I have a friend in Calif. who got a Rx from her doctor and had it mixed at a compounding pharmacy. (He asked me) He said that the laws could be different there, that he couldn't prescribe it because it wasn't approved by the FDA for use here. I didn't know it was approved for compounding, though--darn! If it's not too much trouble, I would appreciate the compounding pharmacy info.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, I wrote down the name of the drug you have started to take. My GP will send someone to a compounding pharmacy that is located about 30 minutes from me. I know you have told what this is expected to do for you, but could you clarify for my pea brain. Would this drug help calm my allergies so that I can eat out again. I am still going to not cook with anything that has soy, corn and dairy. Thanks for the information. What would we do without your knowledge and research.

Armetta,

You would still need need to follow your diet and avoid whatever you are allergic to. The drug will hopefully heal the damage that has been done so that yes, eventually you can eat out and have a greater tolerance. Its suppossed to calm down allergies only because it heals the leaky gut. It wont stop reactions that I'm having now...I still need to be strict with my diet and allow the drug to do what its suppossed to do. Hopefully in 6 months I'll be eating more things. In my case I know I'll leave out the main things like soy dairy and corn until I'm sure I'm healed enough to tolerate small amounts. Hopefully if gluten is my only real intolerance I will be able to eat a normal and healthy gluten free diet and not have all the reactions I'm having now.

If it's not too much trouble, I would appreciate the compounding pharmacy info.

I'm sending you pm. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Wow Rachel, thanks for all the info.

I feel like I've gone thru a class now. :D:P:)

:lol::lol:

You know what I was noticing today as I wrote all that info?

I was noticing that my whole writing style changes....all of a sudden I go into "studious mode"....like a whole other part of my brain turns on. :huh:

I'm back to normal now though. :P

miamia Rookie
miamia
Posted
Oh yeah...the capsules are gelatin-free. That was the whole reason I called him. :rolleyes:

He said he doesnt use gelatin at all since alot of people are sensitive to it.

Rachel-

Do you have the name and number of this guy. I would really like to call him.

Miamia

miamia Rookie
miamia
Posted
Armetta,

You would still need need to follow your diet and avoid whatever you are allergic to. The drug will hopefully heal the damage that has been done so that yes, eventually you can eat out and have a greater tolerance. Its suppossed to calm down allergies only because it heals the leaky gut. It wont stop reactions that I'm having now...I still need to be strict with my diet and allow the drug to do what its suppossed to do. Hopefully in 6 months I'll be eating more things. In my case I know I'll leave out the main things like soy dairy and corn until I'm sure I'm healed enough to tolerate small amounts. Hopefully if gluten is my only real intolerance I will be able to eat a normal and healthy gluten free diet and not have all the reactions I'm having now.

I'm sending you pm. :)

Thanks rachel I just got the info. It sounds really good- I had an appointment with my doc today and we were saying I am having allergic reactions to so many foods becasue my gut lining is so weakened- the leaky cut, candida, malabsorbtion cycle.

Thanks for all the info and I really hope this helps you!!!

Miamia

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Thanks rachel I just got the info. It sounds really good- I had an appointment with my doc today and we were saying I am having allergic reactions to so many foods becasue my gut lining is so weakened- the leaky cut, candida, malabsorbtion cycle.

Thanks for all the info and I really hope this helps you!!!

Miamia

Thanks Miamia,

I feel like I've done all I can do as far as testing, identifying intolerances, etc. I just need something to get me over the hump so that I can use everything I've learned and actually get somewhere with it. I think this drug may be what it takes to get me over that hump.

rinne Apprentice
rinne
Posted

Rachel, I really hope this medication helps you to heal, it sounds like it may offer the help not only you need but others on this board. That is awesome. Thank you for your posts explaining it and detailing your conversation with the pharmacist. How wonderful to speak with someone who can relate and is giving of their time.

And Christina thank you for your post, it was very informative.

This site is amazing, thank you all.

mouse Enthusiast
mouse
Posted

Thanks Rachel. As soon as I am well from this, I will make an appt. with my GP and get an order for the compounding pharmacy.

AndreaB Contributor
AndreaB
Posted

Donna,

Happy Birthday!!!!!

:D:P:):D:P:)

:wub:B):rolleyes::wub:B):rolleyes:

dlp252 Apprentice
dlp252
Posted
Donna,

Happy Birthday!!!!!

:D:P:):D:P:)

:wub:B):rolleyes::wub:B):rolleyes:

Thank you!!!! I'm 51 today!! :o:blink::rolleyes:

Green12 Enthusiast
Green12
Posted
Thank you!!!! I'm 51 today!! :o:blink::rolleyes:

HAPPY BIRTHDAY dlp :D:D:D:D:D:D:D

It has been a pleasure knowing you on this board and I hope you have a really great day, and many many more to last the whole year through!

rinne Apprentice
rinne
Posted

Welcome to the 51 club, Happy Birthday Donna, hope you have a fabulous day. :)

Green12 Enthusiast
Green12
Posted
Wow Christina that all sounds so complicated.

I have mercury amalgams so I know I have lots of mercury in my body. I had a hair analysis done which isn't very accurate in nailing metals. I forget what all it said. I was higher in arsenic. My hair levels didn't even have b12 so the doctor gave me a shot of b12 and I came home with some of the same. I had my blood levels tested and they were fine. I had started eating eggs before that and I don't remember if I had started back on meat or not. My blood levels were normal. I would love to have the amalgams taken care of but out of the six I have left, 4 more need to be crowned. :o Money, money, money, we are out of, out of, out of. :ph34r:

Andrea,

I got all of my mercury amalgam fillings out around 1994, that was one of the first things I did on this long and winding road to get better. I researched and read a lot of literature about it, I don't recall everything now since it has been some time but the absorption of mercury by our bodies from the fillings alone is unbelievably high. Tests were even done on fetus tissue and there was already mercury toxicity in utero from the fillings.

After I got all of them out I did chelation therapy, multiple sessions for over a year period.

Money, money, money is right!

Thanks Miamia,

I feel like I've done all I can do as far as testing, identifying intolerances, etc. I just need something to get me over the hump so that I can use everything I've learned and actually get somewhere with it. I think this drug may be what it takes to get me over that hump.

Rachel,

It sounds like things are going really well so far with the new medication, and the phone conversation you had with your pharmacist even more promising! Very exciting for you :D

I wish you the best of luck with it :)

jerseyangel Proficient
jerseyangel
Posted

HAPPY BIRTHDAY DONNA!!!!! :D

AndreaB Contributor
AndreaB
Posted
Andrea,

I got all of my mercury amalgam fillings out around 1994, that was one of the first things I did on this long and winding road to get better. I researched and read a lot of literature about it, I don't recall everything now since it has been some time but the absorption of mercury by our bodies from the fillings alone is unbelievably high. Tests were even done on fetus tissue and there was already mercury toxicity in utero from the fillings.

After I got all of them out I did chelation therapy, multiple sessions for over a year period.

Money, money, money is right!

Julie,

I may never have the money for it, but one reason I haven't had it done is because of the baby. He got enough of a load inutero and well as with nursing. I can't have them removed and go though chelation. It would cause him innumerable problems. I'm a long time nurser. The oldest two did 2 years 10 months each.

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      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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