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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator
Well, Rachel, I think you're onto something after this online therapy session! :lol:

:lol::lol:

I feel GREAT....like a load has been lifted. Thanks everyone. :D

I think it's good that you are finding men you are interested in and aren't "well" yet. You are seeing that someone will love you for who you are. :) That alone might help you with your feelings of rejection and abandonment. :)

I think I've already realized that the illness isnt gonna stop people from loving me or wanting to be in my life...so that part is ok. I just havent wanted to even consider the possibility of a commitment or a relationship at all until I'm better. So its not even really possible for anyone to LEAVE me....because they cant even get TOGETHER with me. :P

Everyone

I am so freakin sick. I have to give up on detoxing right now. I have strep throat and my monthly visitor decided to show up and she is being mean. What were the vitamins to take for cramps.

paula

Hang in there Paula. Sorry you're feeling so bad. :(

This might be why you were so dead set against a relationship while you were sick. You seem to be opening up to the idea somewhat though.

I'm really not opening up to the idea at all.....I still feel like I need to be better first. I just think about it alot more because most days I'm feeling pretty good and so the "possibility" of a relationship doesnt seem so out of reach...because I DO think theres a good chance I'll overcome this with the right treatment program. :)

I'll look forward to being able to work out again! I haven't been able to for over a week now. Maybe tomorrow. I still can't today.

I hope tomorrow is your work out day. :)

That's sort of like how I feel with my hubby. I can't talk to him about these issues. When I was really sick and he thought it was all in my head - that frustrated me to tears! I still can't really talk to him about it. It goes over his head and he says "I just don't agree". Well, how can you debate an issue if you know NOTHING about it and NEVER look into it, read anything I read, ect. :angry: so frustrating.

I think its kind of a different issue with my ex. There is still the lack of communication...but I think for different reasons.

I *think* my ex does take the sickness seriously and hasnt ever tried to "dismiss" it or suggest that its all in my head.

It seems more like there is some fear....like "hearing" about it makes it more real.....seeing me have to avoid foods at a restaraunt makes it even MORE real. If I "pretend" that everything is totally normal and this isnt a BIG part of my life....then my ex seems more relaxed and happy. If I talk about it (and I usually do to some degree).....then there is more "distance" and more staring off into space, lack of eye contact, etc.

So yeah...I dont get support like I get from the other people in my life but I'm not really left feeling angry (like if I were being told it was all in my head). I just feel sad, unloved and abandoned. :(

I do think the lack of communication kind of "blocks" me....because this is the person who was the most important person in my life at the time that I got sick. Its kind of like not having any closure.

SCD is going great so far! My stomach is flatter and way less bloated. I am feeling more energetic and the weak leg thing I had for so long is gone. Plus no more little pains in my lower abdomen. This is working for me so far.

Yay.....I'm glad its working for you April! :)


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Rachel--24 Collaborator
However, in the last few weeks, he's become extremely reactive to foods that were not problems before (that I could tell).

I know the theory about how as he's been "cleared" for all the other items in his various subsystems, that the formerly tired Mast cells (or was it macrophages) now have histamine etc .... to spare against items that they were too tired to notice much before. However, things have been getting worse and I'm really scared for him.

Last night I gave him a cookie (gluten-free chocolate chip from whole foods 365 mix), that he has had before (albeit, motns ago) but he immediately got nauseous, a severe headache, vomited, dizzy, etc ....

I don't know which ingredient to suspect (although soy lecithin is a prime suspect). He reacted similarly a few days ago to Celestial Seasonings Cinnamon Apple tea (which I shouldn't have given since it has a laundry list of ingredients).

He is so super reactive now, I inadvertently poison him. He is laid out for 1 to 2 days after an infraction.

My question, did Bioset truly work for any of you in eliminating food allergies or allergies to food additives?

Did any of you verify that it worked by retaking IgE or IgG or skin tests?

To me it sounds similar to my own issues with foods. The Cinammon Apple Tea would probably set me back for at least a week!

It might be that his sulfation pathway is impaired....making him less capable of detoxing natural and synthetic food chemicals. If this is the case the raections are not immune related...they are related to toxicity building up because of impaired detoxification.

I did not have any luck improving this situation with BioSET treatments. The problem with the dysfunctional pathway has to be corrected in order for the situation to improve.

Some foods (like cinnamon apple tea) would put a reallly high burden on the enzyme system that is part of the sulfation pathway. This makes it difficult for the body to detoxify OTHER foods as well as environmental toxins, chemicals, etc. Its like a bucket that becomes too full and begins to overflow....some things are going to be more likely to fill the bucket and once that happens ALL foods will be causing a problem (until you can reduce the toxic load).

Look into the "Feingold" and "Failsafe" diets. Salicylates are a major offender. When I was seeing Anna she did not have any treatment available for salicylates.

I did not improve with the food treatments (I had all the panels done) because as long as my pathway remained dysfunctional the problem is not going to go away. Even if my immune system isnt responding negatively to these foods....my body still cant handle the toxicity that accumulates as a result of faulty sulfation.

Salicylates can inhibit the PST enzyme up to 50%....so if its already impaired....consuming foods high in salicylate (apples, cinnamon and tea) will overload the enzyme casuing toxins to "bottleneck" and then he will become SUPER reactive until his body is able to get some of these toxins through.

This is exactly what happens to me.

AndreaB Contributor

Sorry about the hardness of the detox Paula.

CarlaB Enthusiast
I hope tomorrow is your work out day. :)

Thanks, me, too.

confused Community Regular

Thanks everyone. I think i feel worse by the hour. I also broke out with an rash on the back of my legs yesterday. I think it is a detox rash.

Rachel

Cant wait to wait to hear about your appt. I might have to make myself come check mail again later on tonight.

Ok im back to the sofa and trying to not feel quilty im missing my sons football game.

mftnchn Explorer
Hi folks,

I'm a bit desperate and was hoping to hear from other people who have used the Bioset program for food allergies.

My son is ill with Lyme, and other coinfections, and also has had mold exposure, leaky but, -- the works. It has been so difficult to keep him stable enough or any treatment as his GI system is very weakened. He has some very good days, goest to school, then wham - something I feed him, lays him out for days. This is in contrast, to before Bioset, when he was more tolerant to a lot of things.

I suspect that having various candida and other bad fungi and bacteria in the gut (which we are treating with caprylic acid - he had a bad reaction to diflucan) may make him more sensitive as well.

In contrast, I too, have Lyme etc ... but am not impaired to the degree he is and have a much more robust system at present. I also, have been able to sustain my treatment.

He has been doing Bioset at Delicate Balance, San Jose, since the summer (and have not yet done the food panels or food additives).

However, in the last few weeks, he's become extremely reactive to foods that were not problems before (that I could tell).

I know the theory about how as he's been "cleared" for all the other items in his various subsystems, that the formerly tired Mast cells (or was it macrophages) now have histamine etc .... to spare against items that they were too tired to notice much before. However, things have been getting worse and I'm really scared for him.

Last night I gave him a cookie (gluten-free chocolate chip from whole foods 365 mix), that he has had before (albeit, motns ago) but he immediately got nauseous, a severe headache, vomited, dizzy, etc ....

I don't know which ingredient to suspect (although soy lecithin is a prime suspect). He reacted similarly a few days ago to Celestial Seasonings Cinnamon Apple tea (which I shouldn't have given since it has a laundry list of ingredients).

He is so super reactive now, I inadvertently poison him. He is laid out for 1 to 2 days after an infraction.

My question, did Bioset truly work for any of you in eliminating food allergies or allergies to food additives?

Did any of you verify that it worked by retaking IgE or IgG or skin tests?

Is there anything that can help pull him out of the allergic reaction aftermath?

In fact, is there anything I can do in the midst of an allergic reaction - he cannot swallow anything - so that I cannot administer any antihistamine etc .... (not sure if he is actually having an IgE reaction anyway, no itching, hives, etc ...)

Thanks for any help from you experienced members. I am so hoping that Bioset will be effective (which is an act of faith for me, considering my extreme skepticism, but that's where I am at present).

Deborah

Hi, Deborah and welcome.

Some good comments already, I'll just add my thoughts.

You mentioned gluten-free, so I wonder if your son is diagnosed as celiac or on gluten-free for other reasons? If you suspect celiac, then I would underscore what April said because it could be that his digestive system and intestinal villi are compromised and he is not producing bile, digestive enzymes for stomach and small intestine. The villi damage would impede digestion of sugars/starches especially. Even not celiac, the SCD might very well work. Check out the pecanbread.com; also there is some info there for people whose children also have to be salicylate free as Rachel suggests. SCD would really help address the bad gut bacteria and replace with with better ones. Seems like the caprylic isn't going to be enough for that.

With compromised gut, also he may need food that is especially easy to digest. His reactions could be that he can't handle the food rather than an allergy per se. SCD will help you with this too.

In terms of handling the reactions, here's a few suggestions. The first line defense for allergies is Vit C, according to my allergist. Try getting him on a regular dose and you can do extra when he is reacting.

If you can catch it soon enough that he will still sip a liquid, give him Alka-selzer Gold, or a little baking soda in water. This will often head off an allergy response. My allergist does this in the office when I react to a skin test. It really helps.

You can give him an antihistamine before the meal if you are worried about the meal contents.

Use activated carbon to help mop up the impact of a reaction. It needs to be taken away from food and meds as it absorbs indiscriminately. But given between meals it can help.

Digestive enzymes could really help matters as well. Is he on any of these?

I've not had any experience with Bioset, so can't help you there.

One other thing, are you a reasonable distance and could travel to Coos Bay, OR? That's where my allergist is and he is fantastic. Both a pediatrician and an allergist. He does a form of treatment where he titrates the dosages of the problem foods and makes a drop that the child keeps under their tongue for a few minutes a couple of times a day. This "turns off" the allergic symptoms and can allow the child to eat many more foods. He will tell you right up front if it is a good option for your son and the percentage of patients that respond. He can also help you with chemical sensitivities. If you are interested, PM me and I will send you the name and contact information.

I'm both a lymie and a celiac, and have had lots of allergies over the years.

Sherry

mftnchn Explorer
Liver enzymes have to be checked regularly on diflucan if that tells you anything about how hard it is on the liver.

I would be surprised if you didn't have some sort of yeast issue with the mold exposure. But it could be since you are so good about your diet and not racheling sweets that you kept things under control that way. Wish I could say the same!

Maybe it would be wise to go back to the 95% 5% for awhile and really minimize the carbs--just to give your body a bit more help with the mold.


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mftnchn Explorer
This just struck me as funny! :lol: :lol:

I think you've made great progress in your openness to dating. Months ago you were like, men don't exist to me right now .... lately you seem to be noticing all the hot guys out there. ;)

Struck me funny too, LOL!

I agree with Carla; also I think that your positive approach toward your health problems and looking for solutions is very cool and will be an attractive quality to many. I bet there are guys who would happily join with you on your journey and wouldn't see the restrictions as major problems at all.

Sherry

mftnchn Explorer
I didn't take her advice on stopping the coffee enemas because they seem to take the toxic load off so well for me. That increases the glutathione production in the liver and causes it to dump toxins. Seems like it will work well in conjunction with cholestyramine (the cholestyramine will be there to bind the bile released by the liver).

I have oral glutathione, too, do you think taking more of this would be bad or good? I know you guys aren't docs, but I just wonder what your instincts tell you ......

I'm not sure either, perhaps Rachel will have an idea. I am taking the glutathione by shot, twice a week. It seems to me like it helps the liver by giving the body what the liver can't make enough of. This morning I took my shot and it is helping with the back pain, it seems like.

I think the ecoffee helps too by causing the release of bile. I have the exact same experience, it is the best thing to help relieve symptoms that I have tried.

Sherry

CarlaB Enthusiast
Maybe it would be wise to go back to the 95% 5% for awhile and really minimize the carbs--just to give your body a bit more help with the mold.

Well, yeah, but I don't want to speed up the detox! I might feel worse! I'll think about that when I'm feeling a little better, if that makes sense.

I can't minimize carbs or I feel sick. I've always been that way. It's not a candida thing, I just need carbs.

Thanks for the suggestion, even if I'm ignoring you, ROFL!

mftnchn Explorer
Well, yeah, but I don't want to speed up the detox! I might feel worse! I'll think about that when I'm feeling a little better, if that makes sense.

I can't minimize carbs or I feel sick. I've always been that way. It's not a candida thing, I just need carbs.

Thanks for the suggestion, even if I'm ignoring you, ROFL!

Maybe use more honey and fruit, less potato, grains, etc? So they are absorbed quicker and higher in the gut?

Maybe ease into it as your symptoms improve?

mftnchn Explorer
I'm puzzled too about the no yeast. I have always eaten by the 80/20 rule. 80% what I should be eating, 20% junk (that's not as much junk as it sounds). Earlier in treatment it was more like 95/5.

I was on Nystatin with abx, so I'm sure that helped a lot.

I would think if I had any kind of yeast problem that the Diflucan would be causing one heck of a die-off! It's not. My main herx symptom this herx is my normal pain - left shoulder, left side of back. It gets so bad though that it makes me fatigued. If I take a pain killer, I actually have more energy .. but the Norco also makes me loopy. So, today I'm loopy. :) Adam's gone, so I have to take care of the kids by myself, so loopy is better than so tired I can't get out of bed.

I am puzzled by my own low yeast or bad guys showing up in the testing I have done this year. Seems like it could have been a lot worse. However, we both have had a lot of worms so that indicates compromise in the gut. I was reading yesterday that it not only feeds them sugar (in my case at least) but undigested food, so its a great place for them to want to stay. :ph34r:

Rachel--24 Collaborator

My appt. went really well. :)

I went back to work for a couple of hours after seeing Dr. P.....and now I'm just ready to crawl under the covers and get some really GOOD sleep....especially after 2 nights of anxiety and heart palps. :rolleyes:

At least it was more mild last night and no bad dreams. Woo-hoo! :D

I think I'll post about my appt. tomorrow.....when I'm more awake. ;)

Just wanted to mention that Dr. P. brought up emotional issues today. He was talking about the main issues which "lock" up toxins in the body....and he said that alot of people have emotional issues contributing to their toxic burden.

I told him that I got tested for the emotional aspect of it twice and it didnt show up as an issue at all. He was shaking his head back and forth as I spoke. He said that he can tell its not an issue for me just from the time he's spent talking with me in his office.

He said alot of times he can pick up on whether or not there are emotional issues just from talking with the patient. He said there's no doubt that in my case its all physical. Something happened to me....and its totally physical.

I was telling him about how I've never been able to bottle things up......I talk about EVERYTHING and I dont hold onto things...I let it all out. He said thats really good....its really healthy.

I told him that I wonder if my body's ability to detoxify has ALWAYS been impaired because keeping even the smallest thing inside made me feel uncomfortable and "bothered".

I told him I've always felt like I *had* to let things out...I just wasnt really capable of keeping anything inside (like most people can). It was like I instinctively knew that I couldnt hold onto things....I didnt feel right if I did....so maybe my body was telling me to not bottle stuff up because it simply wasnt capable of carrying that extra burden??

All my life it worked for me.....even if I constantly got myself in trouble for being "too honest". :ph34r:

Anyways, I did fine until I got hit with the dental toxins. :(

Dr. P. thought that this was all really interesting.....and it could be possible that my body was doing what it needed to do in order to stay healthy. I had no control over the exposure I got from the mercury......but I was able to control how I handled any emotional issues that came up in my life.

He seems to be really interested in my case because so far its looking to be different from what he's used to. In the end it might not be all that different......but I think the info. I'm giving him about ME, my experience, my research, my thoughts, all of the testing I've done, etc....is what makes it different. I think if not for that I would be here telling you guys that I'm starting treatment for Lyme now. :o

I'm happy to say though.....that this is not the case. :)

We are getting things narrowed down to the point that we should really know exactly whats going on in the next few weeks. He is looking more closely at the methylation cycle (2 more tests were ordered for that) and he said that unless I have some weird issue that he's never seen yet.....then we should be able to resolve this and get the metals out.

He is very confidant in his ability to find methylation blocks and open them up and this makes me feel good about working with him....I need someone who is confidant. :)

He said his understanding of it is very good. Its what he looks at everyday when treating his autistic patients and he said so far (knock on wood) he has been very successful at opening up the pathway and getting the metals out.

He also knows how to interpret the results of the Genomic DNA testing. Its the really expensive one that Amy was thinking might be helpful. He said he used to use it....but not anymore. Instead he has found that the less expensive tests (urine amino acids and OAT) can provide alot of the same info. that he was getting from the Genomic test.

So he said I dont need that expensive test. :)

We are doing one "section" of the Genomic testing though......its specifically to look at glutathione.

I go back for bloodwork on Monday and I have one urine test to do which is going to France....and the shipping is like $80!! :blink: Its not the porphyrin test. Its something that measures inflammation caused by viruses. Its a common problem with autism....lots of inflammation in the gut and brain from the viral infections....so if this test is elevated...then it indicates inflammation from viral infections.

I dont think this will be an issue....but because of my high HHV-6 titer he wants to run the test (to be sure).

Theres alot more but I'm too tired....so I'll post the rest tomorrow. :)

confusedks Enthusiast
I think most people have some form of guilt in their lives that could benefit from this. I know my hubby and I do, so maybe I'm just thinking it's a common thing, but just at different levels for everyone. I'm so glad these treatments are helping you and excited to hear that you are doing so much better.

The guilt is mainly around eating...My body still doesn't want to start with that yet though, she's treating other stuff (non emotionally related) first.

Rachel, You could definitely call Dr B if you want to have a consult and see what she knows...I'm not sure what she knows as far as blocked pathways...but she is very open and knowledgeable.

AndreaB Contributor

Rachel,

Sounds like a good appointment from what you posted so far. Can't wait for the rest. :)

S is having a rough night. He didn't eat much dinner because his brother and sister finished and left the table, so I don't know if that's part of it. Hoping he settles in for the night within the next hour so I can get some shut eye.

mftnchn Explorer

Rachel, sounds great so far. Your into the "next" waiting, LOL.

Andrea hope S does ok and you have a good night.

Kassandra, looking forward to more updates as you can.

I'm in more pain today. Its moved to upper back and neck and worse. Glutathione helped this morning, took more binders this afternoon. I hope this is just some detox from the Enula, but am afraid it is lyme and being off Zith.

Sherry

CarlaB Enthusiast
Maybe use more honey and fruit, less potato, grains, etc? So they are absorbed quicker and higher in the gut?

Maybe ease into it as your symptoms improve?

Sorry about the increased pain. (

I've messed with different diets over the years. If I eat protein with veggies and fruit as my only carbs, I get ill. I've stayed on that diet for several weeks to see if I saw improvement after time. I didn't. It doesn't work for me. I'm not willing to try it again. I tried it before I was diagnosed, twice. Once on my own a couple years earlier, then again with that voodoo doctor.

Plus, for some reason since we got rid of that bed, I've lost weight and haven't restored it. I always lose weight if I don't eat carbs and I don't want to lose more. Adam came home from out of town and could tell I've lost weight.

I eat well. It's a matter of the definition of "bad" is .... like, yesterday for lunch I made pizza with a crust from whole foods, organic mozzarella, olive oil, and fresh garlic. I count that as junk. ;) It's not like I'm sitting around eating potato chips and whatnot.

I can't use honey, it gives me hives. I can use a little bit of it, if it's processed, but not the raw stuff.

I do eat protein whenever I eat so my blood sugar doesn't drop. :)

Rachel--24 Collaborator
Rachel, sounds great so far. Your into the "next" waiting, LOL.

Yup....I'm in the next phase of waiting for test results....but I guess I'm just happy that I'm not starting Lyme treatment! When I first got there it seemed like that was his intention....to start treating me for Lyme. :blink:

He had only just then started looking through my file because apparantly its against the law for anyone to go through a Dr.'s file on a patient.....even if its another doctor.

I had to sign a release form in order for him to be able to go through it and I hadnt signed it until yesterday at my appt.

I guess all this stuff (new patient forms) got mailed to my house prior to my initial visit with him but since I stay with my mom all week I didnt get the forms. There was so much paperwork they wanted me to fill out last time and I got there right on time for my appt....not knowing I was supposed to have all this paperwork done ahead of time. :rolleyes:

Anyways, there was no way I could complete all of it so they just sent me in for my appt.....and the release form never got signed. :(

He was wanting to treat Lyme based on my IgeneX positve IFA results, IND's on critical bands (WB's) and CD57 scores indicating immune suppression from Lyme (even if not showing severe infection at this point).

mftnchn Explorer

Carla, I get it on the diet; my impression is you eat pretty healthily, and it hasn't seemed like a major part of your healing more recently to avoid stuff.

Rachel, the forms seem unending at times. Glad things are on track now though.

Sherry

aprilh Apprentice

Carla,

You weight loss could actually be loss of inflammation. I lose weight pretty fast after changing my diet and i don't think its "fat" necessarily but more like inflammation or water.

Rachel,

Sounds like a good appointment....so what's next... more testing?

CarlaB Enthusiast

You guys would love this! It's a book written about iridology and natural cures back in the late 1800's or early 1900's.

This page is his take on mercury being used for syphilis treatment. Open Original Shared Link

Here's a quote I found hysterical and had to show you. The "alternatives" are not the natural cures like the word means today, but the alternatives of allopathic medicine.

Possibly; but the experience of thousands of patients, for twenty to thirty years slowly tortured to death, verifies it. Not even the fanatical inquisition nor the imaginative brain of a cruel Indian has ever invented tortures more inhuman and devastating than those inflicted by the "alteratives". How much more merciful would it be to give these victims of medical malpractice in the beginning a good big dose of an "alterative" and have done with it!

I've been interested in iridology since I used to go to this health food store where a lady was learning it. She could always tell me what was wrong with the kids and she was always right. She taught me to see a virus in the eye (acute stage) .... when I saw my mom a year or two after her breast cancer, I asked her if she was feeling alright. She said yes. I said that her eyes looked like she was catching a virus. She said no that she hadn't been sick since cancer. The next day she had a horrible cold.

Anyway, some info in this book is outdated, of course, but it's interesting and has good information.

BTW, I show no signs of mercury toxicity from this method. :) But I do show that my skin is a poor detoxer .... but that I know from that lady years ago.

CarlaB Enthusiast
Carla,

You weight loss could actually be loss of inflammation. I lose weight pretty fast after changing my diet and i don't think its "fat" necessarily but more like inflammation or water.

Could be, I lost three of the four pounds the first day I fell ill after getting rid of the bed. Loss of appetite isn't helping, so I'm trying to eat high calorie foods, thus, the pizza yesterday and the smoothie before bed.

I'm still having major problems. I think I'm doing okay and feeling good, but then the slightest movement (like yesterday when I drove my daughter to flute lessons and back, couldn't even manage the grocery), seems to stir things up. Maybe I'll go for a walk later as it's a beautiful day.

I'm still sleeping through the night, LOL! This is absolutely amazing!!! It's not like the Sleep Number wasn't comfortable, or like this one is more comfortable .... but I'm sleeping through the night all of a sudden with no other changes than getting rid of the mold.

I'm having to go to the bathroom (number one, LOL) so often it's driving me crazy.

Adam said my arms, my legs, and my chest (not breasts, but the upper part) looked thinner. I get boney on my chest when I lose weight ... I try to do a lot of bench presses to help, but ..... My wedding ring is a bit looser.

aprilh Apprentice

My back and neck hurt so bad today. i scheduled a massage for tomorrow. I don't know why this always happens. I got one last month about this time. I think I am going to try and go every 2 weeks and see what happens.

My chiro says my ribs go out. Then I let it go for a while and it starts moving up my back and neck. I even get little pains in the front of my rib cage. Like in the middle of my chest. Its scary because its near my heart, but I know its not my heart because when I go get adjusted it goes away until I start having problems again.

AndreaB Contributor

Sherry,

Hope your pain eases.

Carla,

Hang in there. I hope you can get a balance on the weight loss and get back up to where you want to be. Do you think a lot of this is due to the mold toxins being detoxed?

April,

Sorry about your pain too. Hope the massage helps tomorrow.

CarlaB Enthusiast

April, sorry you feel so bad. Maybe you should get more adjustments .... like when your ribs start to show signs of being out rather than waiting until it causes more problems. :)

Andrea, I made no other changes, so there isn't another reason I could be dropping weight. I don't mind this weight .... 128 isn't bad for my height .. it's just last time I dropped even lower, my hair fell out, my muscles wasted. I just got my muscles and hair looking decent again, I don't want to start over!

LOL, most people wouldn't think it was a problem to lose 4 pounds of bloat! :lol:

I'm still reading that article I posted. There's a link to the table of contents. I'm reading about inflammation and how it's like fermentation. This is interesting stuff, LOL.

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      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
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