Not Good

[Judyin Philly]

HI Brian

I'm still keeping tabs on you

There are so many wanting to help you

No one knows your body like you do.

Glad your looking into SOD

After San's procedure on Monday you'll have a real PRO IN THAT AREA TO TALK TOO.

also Brian, i was thinking,,,,,,,,,,,,,,if you do look into this and have the Dr. documentation.....it can only help in your application for SSI

Remember...........I'll be here to help you with answering those questions for the application.

hugs and continue to admire your fighting spirit.

Judy

[GlutenWrangler]

Judy,

I hope everything goes alright for San. I'm definitely going to try my best to get diagnosed with SOD. I'm still not sure which doctor I'm going to see, but I'll definitely be seeing someone soon. And then I can get the ERCP over with to see if I have it. I agree that it can only help my SSI case. Thanks!

-Brian

[gramma bea]

Thanks everyone. I'm having a couple more tests done on Friday. I just don't understand how I could go from 100% to 35% when seemingly nothing has changed. I really didn't think it could get any worse than it already was. This is just ridiculous. Does anyone know if kidney function ever rises back up to normal after it has been down so low? I guess I should start researching kidney disease. Thanks again,

-Brian

Yes Brian, kidney function can rise with proper diet. My brothers was down to 17%, and after a couple of months of following a special diet for kidney function, he is now back to 45% and climbing.

Keep the faith, and I will include you in my prayers.

[GlutenWrangler]

I'm glad to hear that your brother's kidney function is rising again. But for me, the only problem with that is I can't follow a special diet. My diet is limited to what they give me in my IV. However, my Nephrologist was telling me that kidney function can drop if there isn't enough protein in the diet. Maybe if I was provided more protein through the IV, my kidney function would rise. But I think the most pressing question at this point is why this has happened in the first place. Maybe if my recent tests help my doctor figure out why, we'll be able to reverse it. That's what I'm hoping at least. It's definitely scary not knowing why this is happening.

-Brian

[YoloGx]

I'm glad to hear that your brother's kidney function is rising again. But for me, the only problem with that is I can't follow a special diet. My diet is limited to what they give me in my IV. However, my Nephrologist was telling me that kidney function can drop if there isn't enough protein in the diet. Maybe if I was provided more protein through the IV, my kidney function would rise. But I think the most pressing question at this point is why this has happened in the first place. Maybe if my recent tests help my doctor figure out why, we'll be able to reverse it. That's what I'm hoping at least. It's definitely scary not knowing why this is happening.

-Brian

Hi Brian,

I am sorry if some of my suggestions upset you. I can certainly undertand why your situation is so scary. Hopefully you can see some humor in being hung upside down from the world tree like poor Odin with one of his eyes poked out. Believe me I know what its like, having nearly died from a very similar condition to yours.

I am glad you actually have some of the few doctors in America that understand celiac. I wish I did. If you look elsewhere on the Board you will discover many others of us have not had such good luck with their doctors. Your fortune with doctors may be because you are close to the Mayo Clinic which has been studying celiac for years. Out here in the West its few and far between -- and horror stories abound. My apologies to your docs in any case! I honor their investigations to better understand this condition. We need more rather than fewer of them.

Meanwhile it seems somehow or other your doctors need to figure out why your body is so reactive. I was finally lucky enough to discover that my inability to manufacture or make use of regular B-1 was causing some of my worst reactive symptoms, even apart from the gluten intolerance. The B-1 is needed for carb and protein absorption and metabolism. I thus needed to have co-enzyme B vitamins since they do not need to go through the liver to be aborbed. For me it made all the difference in the world! I just thought it Might apply to you also given your current troubles despite the fact you are being given all the vitamins you supposedly should need. I doubt it would harm you to try it out. I was for example taking high quality B complex vitamins for years with little good effect. The unfortunate thing is that they usually don't test for B vitamin deficiencies or absorption difficulties other than B-12 and folic acid. they don't have B-1 shots either and I am allergic to sorbitol withthe sublinguals. But Country Life makes a good kind of co-enzyme b complex I can handle.

It also may well be that you need extra digestive enzymes in order to break down food of any kind, whether IV or not, as well as things that can heal and soothe the lining of your gut and now the kidneys. If you are not ready for the traditional herbs you might enquire of your doctors about the virtues nattokinase or serrapetidase to take down inflammation and scar tissue and excess fibrin. I use the nattokinase with the bromelain/papain for this purpose. There are a lot of studies out on the virtues of nattokinase and heart disease etc...

Alternatively you could also look into German Pekana spagyric homeopathics. They are much stronger and more effective than regular homeopathics. My experience of them however is that they didn't work in a way that agreed with me until after I was taking the co-enzyme B vitamins... Before I took them I could not handle detoxing with the Homeopathics or most other detoxing regimens except for the herbs. It was just too hard on me. However after I was taking the co-enzyme B vitamin complex the German Pekana Spagyrric Homeopathics were quite effective.

The cool thing about them is that all actual physical material is removed--its just the energy that remains, so it wouldn't interfere with your kidney function. How/why it actually works I don't know, however it really does. Given your IV diet and sensitivities it might be perfect for you.

I guess one way to tell whether or not you need to take the Co-enzyme B vitamins is either just try them and see -- or just start to take the homeopathics. If there is no trouble with the homeopathics (start slow!!)--and they are effective-- then you should be home free.

I found the Pekana remedies: Renelix, apo-Hepat, Dalektro N, Pro//aller and apo-Dolor to be of help to me given my kidney, liver, inflamation, joint pain and allergy problems. I still take them now and then when I decide to go off the herbs. You can find them on the Internet. I suggest you talk with your doctor about it. It may well be that his or her European compatriots have more experience with this so he/she might be able to get some advice on this from them.

The thing is is that it was in Europe during World War II that they finally figured out what celiac was--due to many people actually getting stronger and healthier during the food shortages of wheat and the like--and then getting worse when it was re-introduced. Thus in Europe celiac is quite well known and has been for years whereas here it is not well recognized at all. Its only now starting to become recognized as a more common ailment by the AMA and even amongst Naturopaths in general. Here in America many doctors and nurses still pooh pooh it--as does my sister for instance.

Hope this helps. Good luck!

Yolo

[GlutenWrangler]

Yolo,

Don't worry, your suggestions didn't upset me. If I came across that way, I'm sorry. I really didn't feel good last night. But you had said that I might want to rethink the long term effects of my IV Nutrition, as if I had a choice. And in all honesty, there is no alternative to it right now, even if it's killing me.

Believe me, I've had my share of idiot doctors as well. When I said that I would prefer an American doctor over an international doctor, I meant Celiac specialists. I think that American Celiac specialists are at the forefront of Celiac research. Regular doctors are pretty much useless when it comes to Celiac Disease. I'm sure it's like that in other countries as well though. The doctors that I have which know a lot about Celiac Disease told me what they know after I had told them that I am a Celiac. They weren't the ones to diagnose me. But they are good examples of non-gastroenterologists who know a lot about Celiac Disease.

I actually bought some Wobenzyme a while back, and never used it. I know that it has papain/bromelain in it, and it said that it's a good systemic enzyme. Maybe I'll try it out. But in the past, I always had trouble taking digesive enzymes. I tried a few different types, but it didn't work out too good. But that was a while ago, so I'll think about trying it.

Although I am near some great hospitals, I'm actually nowhere near the Mayo Clinic. The closest one to me is in Florida, which is about 1300 miles away. But regardless, I am near Massachusetts General Hospital, which is rated as the 4th best hospital in the USA. I haven't seen any doctors from Mass General yet though. Hopefully I won't have to.

I'll check into the Co-enzyme B vitamins as well. I see my doctor on Tuesday, so I'll ask her about it. As for the other supplements, I'll do some reading about them on the internet. It would be great if they could help. Thanks

-Brian

[YoloGx]

Yolo,

Don't worry, your suggestions didn't upset me. If I came across that way, I'm sorry. I really didn't feel good last night. But you had said that I might want to rethink the long term effects of my IV Nutrition, as if I had a choice. And in all honesty, there is no alternative to it right now, even if it's killing me.

Believe me, I've had my share of idiot doctors as well. When I said that I would prefer an American doctor over an international doctor, I meant Celiac specialists. I think that American Celiac specialists are at the forefront of Celiac research. Regular doctors are pretty much useless when it comes to Celiac Disease. I'm sure it's like that in other countries as well though. The doctors that I have which know a lot about Celiac Disease told me what they know after I had told them that I am a Celiac. They weren't the ones to diagnose me. But they are good examples of non-gastroenterologists who know a lot about Celiac Disease.

I actually bought some Wobenzyme a while back, and never used it. I know that it has papain/bromelain in it, and it said that it's a good systemic enzyme. Maybe I'll try it out. But in the past, I always had trouble taking digesive enzymes. I tried a few different types, but it didn't work out too good. But that was a while ago, so I'll think about trying it.

Although I am near some great hospitals, I'm actually nowhere near the Mayo Clinic. The closest one to me is in Florida, which is about 1300 miles away. But regardless, I am near Massachusetts General Hospital, which is rated as the 4th best hospital in the USA. I haven't seen any doctors from Mass General yet though. Hopefully I won't have to.

I'll check into the Co-enzyme B vitamins as well. I see my doctor on Tuesday, so I'll ask her about it. As for the other supplements, I'll do some reading about them on the internet. It would be great if they could help. Thanks

-Brian

I am glad I didn't upset you. This must be incredibly tricky and frustrating for you not to speak of frightening. For me it was always like trying to find the shape of the elephant--as a blind person--for years. At first I thought I was going to die but my grandmother as I said helped me out and I was gradually able to discover much better health after many twists and turns. You might want to enquire of your relatives to find out if anyone has gone through anything like this in past generations if not currently and see what worked for them (or not).

Meanwhile I think that you might want to try something a little less strong than the Wobenzymes at first just to see if enzymes are OK for you, especially if you have had troubles with strong enzymes in the past. I can't take wobenzyme for instance or anything with HCL since ironically I produce plenty of stomach acid. What I am low on are pancreatic enzymes. My understanding is that many celiacs need pancreatic enzymes at least at first which makes sense since they target the upper colon. Bromelain/papain interact and make each other more effective. This combo too has proven to be of use to most celiacs--it helps digestion plus helps to take down inflamation. Its also a lot cheaper than Wobenzymes.

I am glad you are willing to consider co-enzyme B vitamins. There is another thread here on twitching eyes etc. I suggested there that folks try the Co-enzyme B vitamins and a few have actually used them and found the eye twitches stopped almost immediately! OK its not the same as your problem however it could be related since malabsorption to the nerves may be involved and thus stress to the rest of the system.

If it works for you, I will say Thanks to the Gods!

-----Yolo

[Judyin Philly]

Good Morning Brian.

Just wanted to drop in to say 'HI'

Wrote you a note on SOD Your story was so well told

keep plugging away friend.

Judy

[GlutenWrangler]

Yolo,

I actually have a really small family, and it turns out that I'm an anomaly. Nobody on either side of my family has dealt with anything remotely close to what I'm dealing with. My sister actually had some GI problems for a while, but they went away. Although I do believe that she could be a latent Celiac, especially considering she has the DQ2 gene, and my mother and I are both Celiacs. But she would never submit to a gluten-free diet, even if she tested positive via blood test and biopsy.

I had no idea the Wobenzyme was so strong. Thanks for the warning. I actually don't really tolerate enzymes that well, so I'm sure I'd have trouble with Wobenzyme. So I'm not sure what to do regarding enzymes. And considering that enzymes are generally well tolerated, I doubt that they have "gentle" enzymes. But I'll do some searching online.

I'm also going to look up the Co-Enzyme B vitamins. I'm definitely willing to try them if they could help. Do you have a brand that you recommend?

I understand what you mean about how you felt like you were going to die. I feel that way sometimes. I've begun to accept the fact that what I'm dealing with is serious, and it could be fatal. I just hope I can get some answers soon. Thanks for your help

Judy - Thanks for the support!

-Brian

[YoloGx]

Yolo,

I actually have a really small family, and it turns out that I'm an anomaly. Nobody on either side of my family has dealt with anything remotely close to what I'm dealing with. My sister actually had some GI problems for a while, but they went away. Although I do believe that she could be a latent Celiac, especially considering she has the DQ2 gene, and my mother and I are both Celiacs. But she would never submit to a gluten-free diet, even if she tested positive via blood test and biopsy.

I had no idea the Wobenzyme was so strong. Thanks for the warning. I actually don't really tolerate enzymes that well, so I'm sure I'd have trouble with Wobenzyme. So I'm not sure what to do regarding enzymes. And considering that enzymes are generally well tolerated, I doubt that they have "gentle" enzymes. But I'll do some searching online.

I'm also going to look up the Co-Enzyme B vitamins. I'm definitely willing to try them if they could help. Do you have a brand that you recommend?

I understand what you mean about how you felt like you were going to die. I feel that way sometimes. I've begun to accept the fact that what I'm dealing with is serious, and it could be fatal. I just hope I can get some answers soon. Thanks for your help

Judy - Thanks for the support!

-Brian

Hi Brian,

Too bad your known family is so small. I bet someone else up the line could have had some similar problems. In my own family we certainly have. Though on the other hand my mother was an only child and my father just had one brother and an adopted sister. You aren't part Scottish, Irish, English or Scandanavian are you? Celiac and problems of intense allergy and malabsorption seem more common in these groups though it also goes on elsewhere. I think even Matisse had some similar problems.

Its very likely because of the celiac you developed leaky gut--which makes you more sensitive (i.e., allergic) to foods. Hopefully by going on the IV the leaky gut is healing and you will be less reactive down the line. My nephews were on IV quite a lot as children and got over it. So there is hope!! Just because I think it might be hard on me doesn't mean the IV is hard for you.

Yeah I think its important on the one hand to recognize the seriousness of something like this while having a positive attitude with a sense of humor about it all and meanwhile leave no rock unturned. A real balancing act, but hey! Perhaps you are being trained as some kind of spritual warrior--at least that is one way of looking at it since developing a strong spirit is essential for this kind of thing.

About the enzymes--I have found that if you start with low doses and avoid things like ox-bile and too much HCL (unless that is what you need!) you should be OK with the enzymes. The point of taking the enzymes is that they really can help make a big difference when you are allergic to almost everything. They are also helpful sytemically (if taken away from food) for various processes in the body.

By the way--its not pancreatic enzymes--they are instead called pancreatin. Usually they come with some amylase, protease and lipase included as well. Try a half dose to start and see how you do. Take more if its no problem, then back down if that is. For now though with no real food you might want to keep the enzymes at a low dose...See what your doc. says.

The brand of co-enzyme B vitamins that I like is Country Life. If they agree with you, the cost of a large bottle is quite reasonable. There are sublinguals made by other companies but they are more expensive--although on the possible positive side they are often more specific. Most have sorbitol however, which I didn't really like. One has to do trial and error. I take 2 a day, away from food since you want the co-enzyme B's to go directly into the blood stream and not through the liver.

Again, good luck!

Yolo

[JNBunnie1]

I would guess that throwing a crapload of digestive enzyme into a system that isn't really digesting anything would throw it off a little. Maybe, if you're interested in at least trying, you could just buy a papaya and juice it? Fresh is always better than bottled, and you could just try a little at a time. You seem to be tolerating sugary drinks fine, so I'd guess that would be ok. Even dilute it with water.

[GlutenWrangler]

Yeah it's kind of true that I'm not really digesting anything. But enzymes have a lot of helpful properties when taken on an empty stomach as well. They clean up a lot of the trash built up in your system.

Papaya isn't a bad idea either. I bought myself a juicer over the summer, so I could juice it. I'm just not sure if I'll be able to tolerate it, because I've had a lot of problems tolerating fruit in the past. But it's worth a try. Thank you for the suggestion!

-Brian

[Gracie's Mum]

Hi Brian~

I don't know a whole lot about all this yet (my daughter,17, was just formally dx yesterday)

but I wanted to just give you a quick post to let you know you are not alone with

the seriousness of this disease. I'm so sorry you are going through all this too!

My daughter is complicated like you...liver issues, seizures, allergic to all foods, gastro paresis, allergic to the TPN, (anaphylactic shock), tremendous all over pain, autonomic and parasympathetic, renal, pancreatic issues and heart problems.

Just 3 yrs ago she was a normal functioning high achieving student and multiple national champion athlete.

We are hanging in there and have a new doc that is a bio chemist specializing

in Celiac's with a lot of experience with cases like my daughter. He has done neuro

transmitter testing and some other testing that has shown unknown conditions that

apparently play a part in the Celiac's - particularly the severe allergies she has

with the leaky gut. He did specific enzyme testing which showed she is producing too much of one and nothing of another. I'll be getting her new meds/supplements list and hard copies of her tests in the next few days and maybe we can compare notes? This is the first bit of hope we have had in months...and maybe somehow it could help you too. Of course the issues will not be the same but it could be a doc for you who would do more exact testing to see what your body has too much of and not enough of.

Peace!

Gracie's Mum

[GlutenWrangler]

Gracie's Mum,

I'm so sorry to hear about what your daughter is going through. She's definitely not alone in the way she feels. I was high functioning like your daughter about 4 years ago, then it all went downhill. I was admitted into Pharmacy School in Boston, but my illness prevented me from going. That was tough to deal with.

It really sounds like your daughter has a great doctor working on her case. Unlike most doctors, he really seems to be up on the current Celiac research. I'd love to find a doctor like that. I'm sorry to hear that your daughter had a problem with TPN. It was a lifesaver for me. Is your daughter able to eat anything right now?

Anyway it was really great to hear from you, and I would absolutely love to compare notes. Our cases are very similar, and equally distressing. Feel free to send me a Personal Message (PM) anytime. And if you need anything, don't hesitate to ask. I look forward to hearing from you.

-Brian

[Gracie's Mum]

Good morning Brian~

Ohh I'm so sorry about your having to bug out of school - as I tell Grace though, as hard as it is not to be there now, school will always be there and hopefully you both will get back there soon.

Do you know what triggered your Celiac/health problems?

Can you not eat anything because of the reactions and is it mostly from leaky gut?

Have you found anything that helps your food allergies?

For the last few months Grace has only been able to eat organic frozen

fruit bars, spelt bread, Italian Ice and organic pretzels (with liquid benadryl around

the clock) - basically food that is poison to her system. Everything else she eats

either comes right back up, (even water), causes horrific pain or allergic skin and breathing reactions. Anything that is not a whole food causes Grand Mal Seizures and arrhythmias for her. Especially anything with man made chemicals in it - ensure is the worst for her.

I know it's hard to deal with the TPN and not be able to eat but at least you are getting nutrition that way for now until you can get more answers. I'm sure your doc will figure out the kidney issue with the TPN and get you back on the right kidney road.

Do you have a PICC or a PORT? Grace is allergic to the materials in her PICC lines - we are now searching for different materials that she may not react to as quickly. I have been very afraid for her to get the recommended PORT because it is so much more involved if she were to have an allergic problem with it too.

Grace's new doc does phone consults and testing long distance, so if you find eventually you would be interested in his DNA enzyme testing and such it is definitely possible. We found him through a large support group that some of them had their gut and other health problems solved by him (that big University hospitals and specialists had no clue about). He has a national radio show but I have not tuned in yet... We are praying for the good results for Grace with him as the others have had. He said she should have improvements in about 6 weeks of treatment but that the gluten with drawl will be hard the first two weeks. She is really tough so I'm not worried about that part - just the part of...will this finally work for her....

If not we feel we have 2 other options waiting. NAET being one of them that we would like to do simultaneously with her new treatment but it is so difficult to get her to those appointments. Have you tried it? It was amazing for my son's allergies (that was 10 yrs ago) but his were more typical and not as complicated.

I hope you are having a 'good' day today.

Hang in there!!!

Peace!

Gracie's Mum

[GlutenWrangler]

Gracie's Mum,

It's true that school will always be there. Health always comes first.

I'm pretty sure that a stomach virus triggered my Celiac Disease and associated health problems. My health literally changed overnight, and I start dropping weight like mad.

Part of the reason that I can't eat is because of the reactions that I have from food, and the other part is due to severe abdominal pain caused by Sphincter of Oddi Dysfunction. But so far nothing has worked for my allergies. I've tried a few different medications, but they were no help. I was eating Jello and Italian Ice for a while, but even that was too much to handle.

Your daughter's reactions seem very frightening. My reactions aren't quite as extreme, but they are definitely enough to keep me from eating. As hard as it is to not eat, I'm very grateful to be on TPN. It truly saved my life. It's such a great alternative to food while everything is being figured out. I'm sure my doctors will be able to figure out the kidney issue soon as well. I'm awaiting some test results now.

I have a PICC line. It's been in since June 27th, and I haven't had any problems with it. I had to get it changed in December because the orginial PICC line broke, but other than that, it has been great. But I'm sorry to hear about Gracie's problems with the PICC line. I hope her doctors are able to find some allergy friendly alternatives for her.

The Enzyme DNA testing is definitely something for me to think about. If it helps to clarify what's wrong with me, I would love to try it. Could you provide me with the doctor's name? I'd definitely like to look into this further.

I think that the gluten-free diet will really help your daughter. The gluten withdrawal was pretty much non-existent for me, so Gracie may not have a problem at all. The diet really works wonders for many people, and I'm sure it will help to decrease gut inflammation.

I haven't tried NAET. This is actually the first I've heard of it. On a similar note, I am thinking about trying acupuncture. I definitely think that alternative medicine could help. I'll definitely look into NAET as well. I'm willing to try anything that helps. Thanks for the information. I hope all is well with you and Gracie. Take care,

-Brian

[scotty]

i'm not sure how the ones that seem the worst on here seem to be the most intelligent and thorough with their discussions and explanations...or how they can even find the energy to post so much...you've the strength of a saint and before they even begin to tell your legend you will hold the inspiration of us all

i got to find me a doc, a secialist, someone...well someone that knows it through and through. i may wait here til your healthy and just ask you. i'll know i cannot lose.

[deesmith]

Just a quick note, because I felt this was important:

Your daughter cannot eat spelt bread. It's not gluten free.

Dee

[GlutenWrangler]

Scotty,

Thanks for the kind words. For me, posting on this forum is therapeutic. It makes me feel better to help others. Plus, many of the people here are very supportive. It helps to know that others can appreciate how difficult some of our lives are, since we don't always receive that type of consideration out in the world.

I would really love to be a source of both inspiration and information to others. I hope that I can reach the point where I have regained my health, and can share the experience with others who need help. Hopefully things will turn around soon. Thanks again,

-Brian