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Omg...i Might Be On To Something

Rachel--24

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confusedks Enthusiast
confusedks
Posted

Everyone,

Thank you for the suggestions. I think I may call the PT office I used to go to (after my hospitalization in June for my back) and see if they can help me. I am worried about chiropractors because I went to one for about 6 months for my back (before we knew about the spinal curve, etc.) and he just wanted to keep adjusting my instead of taking x-rays to see if my spine was all right. Then my MD told me a horror story about a patient dying after seeing a chiropractor. :(:o

Sherry,

Thank you for the idea!! I will try that! My mom is going to put a letter together today actually telling the doctor some basic info about ferritin and iron deficiency and how it affects a patient's well-being (or lack thereof in my case). Then she will say that we are unwilling to wait a week in between the IV's and the abx. Also, that the hematologist only released me into her care because he thought she was going to be taking blood every week...and she has "forgotten" to do that.

I hope a letter helps her move her butt.

It's great to hear you are doing so much better....there is hope! One day I will look back at all of this and just laugh because of their stupidity. <_<

Carla,

I know...it is funny (kind of) just because their lack of promptness. The GI seems just so unconcerned. She is literally the best IBD Dr. in all of Southern CA and she doesn't know what ferritin does. I wonder how many possibly malabsorbing patients she sends away because their hemoglobin is fine? UGH!

I am jealous of your lattes! ;)

Jin,

I'm kinda of the mindset that the less allergenic foods I have in my diet...the better off my immune system is. For me, I am dairy, gluten and soy free and still am not better. So you may find some relief with a completely dairy free and/or soy free diet. Also, people who have intolerances to dairy tend to have problems with soy...my "regualr" western Allergist told me that...that's when I decided to go soy free. And, honestly it's not that big of a deal. Just say good bye to convenience. Lol!

As far as chocolate...most dark chocolate (organic..not Hershey's, etc.) is dairy free. It may be harder to find ones that are free of soy lecithin...not everybody reacts. I can have a piece of gum like once a month and be fine, but anymore than that...I can't do. You can experiment with that one though. Trader Joe's and Whole Foods brand dark chocolate are both dairy free and soy free. That's only the dark though, I don't know about milk, etc.

Signing out of school was really hard...especially when the teachers were like "are you doing better?" I was like NO!! Why would I leave school if I was better? UGH! Oh well. And, I was the "perfect" student, so I have to let go of that...the entire 11th grade teaching team knew me...and loved me. sigh

I hope any appt's you have go well.

April,

I would love to try a sauna, but I don't know where I would do that. I no longer have a gym membership...hmm. We were going to try to sign up again...but it's expensive. Stuid LA gyms...overpriced.

Kassandra

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aprilh Apprentice
aprilh
Posted

Kassandra,

I don't know if this would apply to you but YMCA has a special membership option for people who can't afford the "regular" dues. Due to illness or whatever the case may be. This is what i did. I applied and got approved for a familly discounted rate.

You fill out some paperwork and you would probably need to list some of your health issues and all the money that goes into that and they will let you know what your rate will be.

When I was a teenager I paid like $18 per month! I was sorry that I let that membership expire!

Now I pay $55.00 when the regular rate is $84.

Just a thought!

But if not, anyway you can get some sweat going is helpful. Its just harder to do in the bath.

MY ND did tell me about another way though. You get in a hot bath and soak for as long as you can. Get nice and toasty. Then when you get out, wrap up in a sheet, put socks on, and hop in the bed and cover up real good. Make sure you are staying toasty. Go to sleep and when you wake in the morning you might see some some dark colors on the sheet. She recommends this for detoxing from cigarettes. She says you can see the nicotine stains on the sheets that came through the pores of the skin. Even if you didn't smoke, I am sure it has the same affect with toxins.

I used to smoke so I am sure I am filled up with "junk"!

confusedks Enthusiast
confusedks
Posted

April,

The problem with the local YMCA's is that they're pretty gross. Also, my mom makes good money, but with all the medical bills...her money goes too all the doctors...lol. ;) So, the bracket we fall into is not "needy" but they don't realize the cost of living. It may work though...if you tell them how much money goes to medical...ALL OF IT! LOL!

We do have a great gym about 2 major blocks away, but I guess I just need to sign up for it again. I used to go, but we let the membership go because I was too sick to ever go. Not that I feel any better, but everyone with Lyme seems to emphasize the importance of weight lifting.

I will also try the sheet thing and see if that helps. Thanks for the ideas. :)

Kassandra

confusedks Enthusiast
confusedks
Posted

Does anyone have a good lotion that they use that isn't too strong scent wise? Also, gluten free? My hands and legs have been realllllly dry lately.

Thanks! Kassandra

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
She says you can see the nicotine stains on the sheets that came through the pores of the skin. Even if you didn't smoke, I am sure it has the same affect with toxins.

I used to smoke so I am sure I am filled up with "junk"!

April,

totally wierd that you mention this because yesterday morning I woke up and I could *swear* I smelled like cigarettes. :huh:

I sometimes sweat at night but I had lots of layers on...plus the heater....so probably was more toasty then normal. Anyways I smelled it!! I smelled it on my hands and all around me...but I havent had a cigarette in like 2 years. :unsure:

I'm not sure if I detoxed some...or if I was just hallucinating the smell of cigarettes. :unsure:

Anyway...it was totally grossing me out. YUCKY cigarettes!!

I smoked around a pack a day for about 14 years. :ph34r:

ami27 Apprentice
ami27
Posted

I have to go in tomorrow for a D&C. What they did yesterday didn't work. I really, really wanted to avoid this. I did everything to avoid it, but looks like it's necessary. I'm a little scared. I hope they don't do any damage. There's always that possibility. I'm trying to be as positive as I can. I'm still amazed that this is all happening.

CarlaB Enthusiast
CarlaB
Posted
Not that I feel any better, but everyone with Lyme seems to emphasize the importance of weight lifting.

Or some kind of strength training .... you could even get a Yoga DVD .... I did that for a while .... I learned about some simple stretching moves that I still do. There is a lot of strength in Yoga and it's not as tiring, rather it's relaxing.

I still prefer weights though. ;) Dr. B says strength training in his guidelines, I believe .... but that can go beyond weights and the gym if it needs to.

Does anyone have a good lotion that they use that isn't too strong scent wise? Also, gluten free? My hands and legs have been realllllly dry lately.

Thanks! Kassandra

Can you use coconut oil?

I use Burt's Beeswax lotion when I'm really dry.

I have to go in tomorrow for a D&C. What they did yesterday didn't work. I really, really wanted to avoid this. I did everything to avoid it, but looks like it's necessary. I'm a little scared. I hope they don't do any damage. There's always that possibility. I'm trying to be as positive as I can. I'm still amazed that this is all happening.

I'm sorry .... this is a tough time for you.

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Green12 Enthusiast
Green12
Posted

Ami, you've been through so much, you are in my thoughts and I hope tomorrow goes well. My mom had a D&C years ago, she came through it fine. I think they used to do these more in the past then they do now, but I'm not sure? Take some deep breaths, keep focusing on those positive thoughts and it will be over soon.

Carla, I do lots of yoga. Not only is it great exercise, but it works all the muscles, increases oxygen flow throughout the body, improves flexibility, AND releases TOXINS!! You can't lose with yoga :D If I didn't have all this edema and inflammation I would be all toned muscle, sigh....

Kass, I have the urge to call you little Kass :ph34r: (me and my nicknames :lol: ) I use Alba Botanica Very Emolient Body Lotion. I get it at the health food store in a HUGE bottle. It goes on sale frequently too so I try to stock up when it does. They have different formulas, unscented, extra moisturizing, etc.

confusedks Enthusiast
confusedks
Posted

Julie,

Hehe. That's cute...I don't usually go by nick names, but I don't mind. I think I will try that lotion, I have their facial moisturizer...it's amazing!

Everyone,

I have some good news to report. I'm going to start the iron IV's on Monday. Well, it's not for sure, but we are waiting to hear back from the case worker to see if the insurance will for sure cover the PICC line (my mom doesn't think they'll cover it, so she wants to make sure). If they do, hopefully I will get it in on Friday, and then start IV's on Monday.

Once we find out if we can do the IV's (as far as getting appts with the Hematologists' office), we will make the appt. with the LLMD. PRAY ALL GOES THE WAY WE WANT!!! My mom is so close to calling the LLMD's office, if one thing goes wrong, I'm worried she won't call!!!

The GI Dr. wouldn't even talk to my mom, the nurse called and literally said "just have her have the IV's." LOL! I think they are fed up! LOL! My mom is pissed, I don't care at all!!!!

The abx aren't helping at all...still bloating, D, nausea....

Kassandra

aprilh Apprentice
aprilh
Posted

Hello!

I need help from anyone who might have had experience with this.

My daughter seems to be going through "precocious puberty" or early puberty. She is only 7 and I have discovered some hair growing "down below". She has also had some smelly underarms. I am now putting 2 and 2 together and discovering she must have some kind of hormonal imbalance.

This is really freaking me out! I think its just too early. I am looking into taking her to a pediatric endocrinologist to have some testing done.

Does anyone have any experience with this?

Thanks!

April

ShadowSwallow Newbie
ShadowSwallow
Posted

Carla,

Thanks for the reminder about patience. A strong point of mine it is... not! :rolleyes::)

Kassandra,

That is simply beyond ridiculous what your doctors are doing. :angry: Don't they see that a seriously ill patient of there is suffering because of their pettiness! Good for you and your Mom for writing to them!

My Mom got a book out of the library today about making your own scented soaps, bath salts, and bath oils! As a person whose never been able to tolerate many chemicals I got so excited! Guess what people are getting for Christmas from me? :P I'll post the name of the book when I hunt it up again.

Praying for you for your appointment!

Jin,

Sparkling pink e-coffee! :lol: :lol: :lol: That poem's so funny! :D

Ami,

:wub: I'm so sorry. I was born after my mother had three miscarriages, and needed a D&C after the third one. You should come out find from it.

Andrea,

Thanks for the info! I'm not sure how much the LLMD uses alternative medicines, but the nurse there did BioSet for years, so I'm pretty sure she knows a fair bit about herbal things.

Julie,

Thanks for posting that info on the lotion. My skin hates winter, and it's difficult finding something with coconut oil, which my skin hates even more!

mftnchn Explorer
mftnchn
Posted

Ami you are very much in my thoughts.

April, that is awful. There was some posting on this forum and maybe this thread about hormones in milk and meats being a big cause of this problem.

Here in China it is a problem too. Our landlord's twelve year old son just had to have surgery in the private area, and it was related to this same issue of additives in food. He is so angry about it, he says he can't wait until his son is old enough that he can send him out of China!!

confusedks Enthusiast
confusedks
Posted

April,

I can ask my friend. She is now almost 18 and when she was really young (although I don't think she was quite that young) she starting to develop breasts, etc. and they sent her to a specialist to fix the problem. I will ask her more about it tomorrow because I don't remember exactly what she had done. I won't be able to talk to her until about 3.30 my time (I'm in CA). I will post what she tells me.

Sherry,

I know this is kinda off topic, but do you like living in China? I learned Mandarin for a while and I loved it!!!! :D I was going to go to China for 6 weeks over summer break to do a volunteer/study abroad thing with NYU, but my health won't allow.

Birdy,

I used to be really into making natural soaps. I actually was really good at them for a while. That's actually a good idea for the holidays. I don't know if I ever saw natural lotion "recipes" though. Let me know what you find out.

Kassandra

Ridgewalker Contributor
Ridgewalker
Posted

Kassandra and Birdy,

There should be recipes out there, maybe on the net...

I have a body moisturizer that I love, that is homemade. I bought it at the local farmer's market from a woman who makes organic moisturizers, bath powders, and candles. It's wonderful!!! It has oil, sea salt, organic fragrance oils, and I don't remember what all. But it's the best thing I've ever used.

I don't remember what type of oil is in it, but I have her email address around here somewhere. I will dig it up tomorrow!

Edit-- Also, Susie/DingoGirl found a moisturizer that she LOVES from bodymoose.com They aren't scent-free, but some are gluten-free. And she said that the customer service is really above and beyond- so if you were interested in a product you could email or call and find out exactly what's in it. Some of it has oatmeal, but I don't think it all does???

Ridgewalker Contributor
Ridgewalker
Posted

Rachel,

How did you quit smoking? Did you use any particular method? I've been a smoker for about 12 years, and I really want to quit come the new year. I've tried many times before- it's hard!!! The closest I came was during my pregnancies, when I was down to 1 or 2 cigarettes a day. But the past month or two, I've been having mild asthma attacks, which I haven't had since I was a kid... Having them almost every day now. :(

AndreaB Contributor
AndreaB
Posted
I have to go in tomorrow for a D&C. What they did yesterday didn't work. I really, really wanted to avoid this. I did everything to avoid it, but looks like it's necessary. I'm a little scared. I hope they don't do any damage. There's always that possibility. I'm trying to be as positive as I can. I'm still amazed that this is all happening.

I'm sorry Ami. :( I'll be thinking of you. Everything will be fine.

I have some good news to report. I'm going to start the iron IV's on Monday. Well, it's not for sure, but we are waiting to hear back from the case worker to see if the insurance will for sure cover the PICC line (my mom doesn't think they'll cover it, so she wants to make sure). If they do, hopefully I will get it in on Friday, and then start IV's on Monday.

Once we find out if we can do the IV's (as far as getting appts with the Hematologists' office), we will make the appt. with the LLMD. PRAY ALL GOES THE WAY WE WANT!!! My mom is so close to calling the LLMD's office, if one thing goes wrong, I'm worried she won't call!!!

That is great news! Hope everything goes well and your mom doesn't change her mind.

My daughter seems to be going through "precocious puberty" or early puberty. She is only 7 and I have discovered some hair growing "down below". She has also had some smelly underarms. I am now putting 2 and 2 together and discovering she must have some kind of hormonal imbalance.

This is really freaking me out! I think its just too early. I am looking into taking her to a pediatric endocrinologist to have some testing done.

9 is about the normal age for girls to start through puberty now. :(

I believe African Americans start around 8.

Many things contribute to early puberty. I knew about hormones from meat/eggs and dairy, but have learned that soy and plastics can cause alot of problems too. I would be surprised if most children don't have some sort of problem with plastics.......it's everywhere! Two of my children already tested as having plastics that are causing problems (the ASYRA test). We had Laser Energetic Detox for my daughter before we ran out of money but I think it was too little too late. She was starting to have some breast tenderness but hasn't talked about it for the last couple weeks or so.

My Mom got a book out of the library today about making your own scented soaps, bath salts, and bath oils! As a person whose never been able to tolerate many chemicals I got so excited! Guess what people are getting for Christmas from me? :P I'll post the name of the book when I hunt it up again.

Sounds interesting.

Jin,

How'd the appointment go today? Wasn't that today?

confusedks Enthusiast
confusedks
Posted

Well, I ended up taking a nap at about 8.00 and I do NOT recommend that to anyone...lol! I was so tired I couldn't walk upstairs, so I slept on the couch and now...ugh. I have read every thread on LN and I am still wide awake..lol.

Let's hope this seemingly new problem of insomnia will go away eventually. It's killing me. Oh, did I mention I took these stress things that always used to make me sleep for almost 16 hours, and I'm still wide awake. LOL!!!

Also, I don't know if I mentioned this, but we should get my Lyme tests back tomorrow. I am not too excited because they will probably be negative, but I hope they are positive!!!

Sarah,

Thanks for the link. I will look into that.

Ami,

I hope all goes well. I was going to have a D&C a year or two ago, and don't they put you asleep...so you wouldn't be in pain during the procedure. I will be thinking of you!

Kassandra

AndreaB Contributor
AndreaB
Posted
Also, I don't know if I mentioned this, but we should get my Lyme tests back tomorrow. I am not too excited because they will probably be negative, but I hope they are positive!!!

No you didn't mention it.

I hope they are positive too, but I'm not holding my breath. Will you still do Igenex if it is negative?

Hope you are able to get some sleep. :(

Ridgewalker Contributor
Ridgewalker
Posted
Well, I ended up taking a nap at about 8.00 and I do NOT recommend that to anyone...lol! I was so tired I couldn't walk upstairs, so I slept on the couch and now...ugh.

Kassandra

GAH! I did the same thing! It's in the wee hours of the morning here, I actually slept a full 8 hours on the couch! Now I'm doing laundry and making cupcakes at 3:30am. :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

So I guess I'm not alone in staying up late tonight! I didnt take a nap...I'm just not sleepy yet. :huh:

Been sitting here reading and listening to Xmas songs. I think its the music getting me all happy and in the holiday spirit. :)

Now its almost 2 am...and I'm eating beef and peas. :rolleyes:

Sarah...I'd rather be eating cupcakes! :D

I finally got my phone today...I dont have to stare out the window waiting for the Fed Ex guy anymore. :lol:

So I've been busy texting...making up for 3 days without my phone. :P

Ami...I'm really sorry things have been so difficult for you. You've been in my thoughts today.

9 is about the normal age for girls to start through puberty now.

Andrea...I know we've had this discussion before...but I still cant believe it!! :(

April...I was really sad to read that. It doesnt seem right that kids are going through this so early...7 is very young!! I dont have any answers but hopefully the Dr. can help with this.

Kassandra, I'll keep my fingers crossed that you get positive results back tomorrow!

Julie,

My vacation has been relaxing...but very unproductive. I've been lazy. :P

I also kept telling myself that I couldnt do anything cuz I had to wait for my phone to arrive. :lol:

mftnchn Explorer
mftnchn
Posted
Sherry,

I know this is kinda off topic, but do you like living in China? I learned Mandarin for a while and I loved it!!!! :D I was going to go to China for 6 weeks over summer break to do a volunteer/study abroad thing with NYU, but my health won't allow.

Kassandra

Yes, actually I do. I am fluent in Mandarin, spoken and written. I type Chinese, but because I don't practice everyday, I blank out when I go to write characters unless I look it up to remind me. Lyme brain doesn't help!

Hey all you insomniacs...too bad I had a full busy day or I could have chatted with you all!

miamia Rookie
miamia
Posted
Ami, you've been through so much, you are in my thoughts and I hope tomorrow goes well. My mom had a D&C years ago, she came through it fine. I think they used to do these more in the past then they do now, but I'm not sure? Take some deep breaths, keep focusing on those positive thoughts and it will be over soon.

Carla, I do lots of yoga. Not only is it great exercise, but it works all the muscles, increases oxygen flow throughout the body, improves flexibility, AND releases TOXINS!! You can't lose with yoga :D If I didn't have all this edema and inflammation I would be all toned muscle, sigh....

Kass, I have the urge to call you little Kass :ph34r: (me and my nicknames :lol: ) I use Alba Botanica Very Emolient Body Lotion. I get it at the health food store in a HUGE bottle. It goes on sale frequently too so I try to stock up when it does. They have different formulas, unscented, extra moisturizing, etc.

Julie-

This is the lotion I use too!!!!!!!!!! I love it !!! I use the unscented one . I used to use their bubble bath too, also amazing but now i pretty much avoid anything with fragrance. Between this lotion and kiss my face olive oil soap (also really good) that is my beauty regimen.

aprilh Apprentice
aprilh
Posted
9 is about the normal age for girls to start through puberty now. :(

I believe African Americans start around 8.

Many things contribute to early puberty. I knew about hormones from meat/eggs and dairy, but have learned that soy and plastics can cause alot of problems too. I would be surprised if most children don't have some sort of problem with plastics.......it's everywhere! Two of my children already tested as having plastics that are causing problems (the ASYRA test). We had Laser Energetic Detox for my daughter before we ran out of money but I think it was too little too late. She was starting to have some breast tenderness but hasn't talked about it for the last couple weeks or so.

I knew about the plastics and beauty products and food being either laced with hormones or how they block hormone receptors. Also toilet paper containing dioxins

What is ASYRA testing? I have been searching and searching and can't find anyone who does LED treatments here in Charlotte, NC. How old is your daughter?

I am going to have some tests run. I just don't like this at all!!!!!

I also read that metals and environmentals can cause this and she has metals.

We started her on a gentle slow detox this summer, but have stopped for now. Won't start again until the summer.

This is so upsetting! She is too young!!!

mftnchn Explorer
mftnchn
Posted

I don't think anyone else here has dupuytrens, I posted once on the board and only had a couple of responses about relatives or whatever.

But I found one site that said no free fats, all vegetarian, then this: soak hands in hot water for 20 min 4 times a day and then work on stretching them. Hmm. If I didn't do anything else maybe. But with my work schedule plus all the other health routines, this is not very practical. Even once a day would be a challenge.

Then keep a low blood sugar. A three to five day fast could help.

Open Original Shared Link

I think the sugar thing may be valid for me to some degree. But the rest, I just don't know. The no meat seems the opposite of what I need. And with no soy, protein would be a challenge with no meat.

At this point I am just hoping it will not get so bad I have to have surgery. Looks like I won't be able to wear my wedding ring now. This latest irritation marked the popping up of a new large lump at the lower joint of my ring finger, and my ring was too tight to be comfortable. I had a really hard time getting it off.

Also, Donna, your exclamations about the website having those yucky pictures made me curious. So I had to go take a look. I agree! It is hard to believe people's intestines would retain all that! Goodness, no wonder people have symptoms! I think about the long term constipation that I have dealt with, read on that website and really have to wonder.

miamia Rookie
miamia
Posted
So I guess I'm not alone in staying up late tonight! I didnt take a nap...I'm just not sleepy yet. :huh:

Been sitting here reading and listening to Xmas songs. I think its the music getting me all happy and in the holiday spirit. :)

Now its almost 2 am...and I'm eating beef and peas. :rolleyes:

Sarah...I'd rather be eating cupcakes! :D

I finally got my phone today...I dont have to stare out the window waiting for the Fed Ex guy anymore. :lol:

So I've been busy texting...making up for 3 days without my phone. :P

Ami...I'm really sorry things have been so difficult for you. You've been in my thoughts today.

Andrea...I know we've had this discussion before...but I still cant believe it!! :(

April...I was really sad to read that. It doesnt seem right that kids are going through this so early...7 is very young!! I dont have any answers but hopefully the Dr. can help with this.

Kassandra, I'll keep my fingers crossed that you get positive results back tomorrow!

Julie,

My vacation has been relaxing...but very unproductive. I've been lazy. :P

I also kept telling myself that I couldnt do anything cuz I had to wait for my phone to arrive. :lol:

Rachel-

glad you got your phone back-

quick question - now that i have been getting chelation for a hwile i was thinking of getting retested for lyme adn see what happens. Any opininions?

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

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • 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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