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Omg...i Might Be On To Something

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted
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Thanks Julie, Kassandra and Laurie.

Everyone...You guys are all the best support group in the whole world! :)

Jin...just wanted to say that I'm really excited for you!! I'm very happy things are starting to happen...you deserve it after all this time. :)

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tom Contributor
tom
Posted
...NO PROBLEMS! :D

....NO REACTIONS!! :D

. .. . not a single problem in any of the things she was testing! :D

. .. .I didnt need to be treated for *anything*. :)

Wow Rachel! Spectacular!

mftnchn Explorer
mftnchn
Posted

Wonderful news! Way to go, Rachel!

confusedks Enthusiast
confusedks
Posted

Rachel,

This is the BEST support group ever! My mom thinks I am crazy when I say "the people from the OMG thread" but I do feel like I know everyone here! It is really cool! :)

Everyone,

We realized that I was supposed to go back to the place that put the PICC line in to have them check it today, but since they thought I was going to be going to my Dr's office today for IV's, they didn't make me set up another appt. I am worried because there are little air bubbles in the clear tubing part of the line, so we are going to call first thing tomorrow morning to see if I need to have the Dr/nurse look at it. Also, they only gave me a temporary dressing, because they thought it was going to be changed today, so we need to take care of that also.

It feels like I am NEVER supposed to get these iron IV's...lol! There has been so much craziness with all of this, it is amazing to me. Grr.

Kassandra

mftnchn Explorer
mftnchn
Posted

It must be so very hard, you have waited a long time and also struggled at every step.

One thing I have learned over the years is that if I am focused on getting over the next mountain all the time, I don't stop and enjoy the current mountain-top and celebrate that I made it this far. It keeps me frustrated, anxious, burdened and restless.

So my thought is to pause and celebrate what you have accomplished so far in this journey. I mean---you have the PICC line, you have the LLMD appointment, the Igenex in process, and you are about to get the iron IV's. Yay!

Do you have a night-time number to call? Maybe you guys can change the dressing. Or maybe they will say it won't matter to wait and you'll feel more at peace.

AndreaB Contributor
AndreaB
Posted
It feels like I am NEVER supposed to get these iron IV's...lol! There has been so much craziness with all of this, it is amazing to me. Grr.

Hang in there Kassandra.

Let us know what the doctor says about the bubbles.

So my thought is to pause and celebrate what you have accomplished so far in this journey. I mean---you have the PICC line, you have the LLMD appointment, the Igenex in process, and you are about to get the iron IV's. Yay!

Well said Sherry.

miamia Rookie
miamia
Posted

Sorry i have not posted in a while but I just had to say RACHEL- I am so happy for you- I am so happy to hear about your improvements and also so happy that you have such a supportive knowledgable group of people treating you!!!!!

Miamia

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Nyxie63 Apprentice
Nyxie63
Posted

Rachel,

That's fabulous news! You've really come a long way. Congratulations!

Offthegrid,

Hi and welcome! Woohoo on the BM! I fully understand your rant about folks feeling bad and not doing anything about it. I have a couple of friends with either CFS or FM. I've talked to them about doing an elimination diet, but they'd rather take pills and continue to feel like they do now rather than be deprived of some of their favorite foods. I don't get it either, but they're grown-ups and its their choice.

Jin,

re: hair... Have you considered looking into some of the all-natural products for highlighting? The local supplement center/health food store offers a couple of them and they seem to be less toxic than what's usually used. I'll check out the brand names for your if you're interested. Btw, my hair's blue right now, but I'm seriously looking into the all-natural permanent purple color they have there. :lol: And congrats on the Igenex test! Its another step! Yay!

Andrea,

Glad hubby made it home ok. :) re: thyroid - I'm thinking of having the samples of the prior 3 biopsies sent to another pathologist for review and a 2nd opinion. Since these are what the dr is basing his pro-surgery attitude on, it'd be nice to have a fresh pair of eyes look at them.

Sarah,

Thyroid/surgery overview - I've had 3 needle biopsies done on Herbie. 1 came back non-diagnostic (but showing follicular and hurthle cells), one was benign, and the last one was suspicious for a follicular neoplasm. Based on the first and last biopsies, the dr wants to take Herbie out.

Now here's where it gets interesting. There are other benign conditions that reflect the same pathology as mine (Hashi's, degrading cyst, hyperplastic thyroid tissue, benign follicular adenoma). There are also 2 types of cancer that show a similar pathology (follicular cancer, follicular variant of papillary cancer). Problem is, they won't know if a follicular neoplasm is benign or not until its taken out and fully examined. To do this, they have to remove half the thyroid - they can't just take out the lumps.

The dr said that while they'll go in expecting to only have to remove half the thyroid, it all depends on what they find while they're in there. They do a biopsy of the removed lobe mid-surgery to see what they're working with. If it comes back as suspicious in any way or comes back as cancer, then they'll remove the other half of the thyroid while they're in there. So I could go in expecting to just get half of my thyroid removed and wake up to none at all! Not only that, while its a common operation, it is a rather delicate one. If they're not careful in there, I could end up with nerve damage, loss of my voice, and/or they could seriously screw up or destroy my parathyroids (which are necessary for regulating calcium).

Rinne,

I've done the C/salt flush too. Bleah! Its definitely easier to drink with a straw. Every time I raise iodine dosage, I do that for a couple of weeks to help flush out toxins. The good thing about taking the sea salt in water is that it doesn't seem to cause the water retention that most folks get from taking salt alone. Do you use celtic sea salt?

There's about a 15-30% chance of this thing actually being cancer. If it was closer to 50% or higher, I might look a little more seriously at the surgery. Right now, I'm still pretty much in panic mode and not thinking straight. When I get like this, I tend to do nothing or run around in circles, rather than be talked into a bad decision. Probably a good thing too. :) Once that settles out a bit, I'll move into full-blown research mode, then decision mode, and then "work" mode, where I buckle down and fight whatever's going on. Its a matter of waiting for the panic to pass.

Sherry,

EEP! Hope the B12s still ok.

Everyone,

Thanks so much for your support and encouragement. And for giving me a safe place to vent. I really do appreciate it. :)

The u/s yesterday was interesting and kinda fun. Love it when I get trainees! No, really. Their energy and enthusiasm is really a breath of fresh air. The whole thing took around 45 minutes to do. I got to see what my insides look like. :lol: Just wish they had a secondary screen on the ceiling so I could have gotten a better view. The only thing that bothered(s) me is that when they put pressure on my right side at the waist in back, it hurt. The pain was bearable, but it got my mind working again (which isn't necessarily a good thing right now). That's where I've been having the pains and its just one more thing to worry about until answers come back.

Anyway, thanks again! :)

CarlaB Enthusiast
CarlaB
Posted
Its really amazing to me! I hope things continue to improve. :)

This is all great news! Congratulations on the progress!!

It feels like I am NEVER supposed to get these iron IV's...lol! There has been so much craziness with all of this, it is amazing to me. Grr.

Kassandra

It's all happening for you, Kassandra .... it just seems like it takes forever ... it's easy to look back at any one of our treatments over the past year and see how far we've come, but each step has been exactly what you're experiencing, painfully slow! It all adds up. Next year you will look back and be surprised how far you've come!

I got my laser yesterday! Open Original Shared Link

So, I lasered for muscluo/skeletal in the afternoon, and organs/structures in the evening before bed. Last night I took half of my Ambien, then didn't wake up till 6AM! It was too late to take the other half, but I fell back asleep anyway. This is the first time this has happened in MONTHS! I always wake up about 3AM and take the other half!

Do you think it's a coincidence? I guess I'll see if it continues tonight. Normally if I can't take the other half, I lie there awake until I get up no matter how long it is.

dlp252 Apprentice
dlp252
Posted
Bad news, it's looking like I'm not going to be able to start the IV's until friday.

It feels like I am NEVER supposed to get these iron IV's...lol! There has been so much craziness with all of this, it is amazing to me. Grr.

Will it never end?! I agree with Carla though...each of us has been there. A year ago almost all of us were at that stage where we were frustrated with how slow progress seemed to be, and here we are, many of us feeling MUCH better. You'll definitely get there!

I swear, a miracle happened, at this point Mom's listening to me and very seriously considering anibiotics.

WOW!!!! HOORAY!!!!!! This is MAJOR!!

It sat out of the fridge for more than 2 weeks. So I am taking it, but who knows if it is still actually good????

Yikes! Gosh, hope it's okay.

I think he herxed on the Augmentin. I talked to my PA back then, she thought he sounded likely to have it, too. He never even finished all the Augmentin ...

Augmentin, my old friend. :P:lol:

Its really amazing to me! I hope things continue to improve. :)

It's amazing to me too! I'm so very excited and happy for you!!! I thank you from the bottom of my heart for turning ME on to all your doctors, lol!!!

One thing I have learned over the years is that if I am focused on getting over the next mountain all the time, I don't stop and enjoy the current mountain-top and celebrate that I made it this far. It keeps me frustrated, anxious, burdened and restless.

I LOVE this...I have a quote in my signature on another website that is similar...it reads: The sudden precious moments in life need to be recognized for the unique periods they are, not wasted by wishing for something else. Edith Schaeffer

Hard NOT to wish for something else when you're feeling like crud, but yeah, I try to keep this in mind on my worst days, lol.

The u/s yesterday was interesting and kinda fun.

Hum, well, kinda fun is interesting. :lol: :lol: Glad it went well, lol.

I got my laser yesterday! Open Original Shared Link

So, I lasered for muscluo/skeletal in the afternoon, and organs/structures in the evening before bed. Last night I took half of my Ambien, then didn't wake up till 6AM! It was too late to take the other half, but I fell back asleep anyway. This is the first time this has happened in MONTHS! I always wake up about 3AM and take the other half!

Do you think it's a coincidence? I guess I'll see if it continues tonight. Normally if I can't take the other half, I lie there awake until I get up no matter how long it is.

Okay, I can't wait to hear if the trend continues. I really want to do the laser treatments too (although will probably NOT get one myself, lol)...Gosh, if it could help me sleep that would be fantastic.

I've been sleeping pretty well since starting the supplements for the neurotransmitters, but this week I've been waking up at 1:00 again and can't get back to sleep. This week is our Christmas "musical". We've had practice or performances every night this week and that will continue through Sunday.

That may be what upset the balance, or it could be because of the Humaworm...when I wake up, I have the intense burning hunger that I used to feel...it may be the Humaworm or my H.Pylori may be back. :( I'm leaning more towards the Humaworm though...I think it's just killing of the buggers and I'm probably not detoxing enough, so my liver is working harder. (My doc says that's the prime time for the liver to detox). Whatever, it's not hunger, lol, because I had two slices of turkey about 40 minutes before I went to bed last night just to see if that would help--still woke up at 2:00 and couldn't go back to sleep and still had the intense burning hunger type feeling.

Offthegrid Explorer
Offthegrid
Posted

So glad to hear of everyone's good news. Rachel, I don't know your entire story, but I did read the beginning of the thread, and I'm so glad to hear that you are making tremendous strides. I am really impressed by how you've hung in there through it all and now you have something to celebrate.

I had a minor relapse last night, but feeling good today. Only new foods were that I had two bananas at lunch, and then natural peanut butter on a rice cake as a snack. Maybe was just too many bananas too close together.

In other big news, hubby and I are settling on our first house tomorrow. I'm really excited -- but I also won't have Internet access for a few days (or time to surf anyhow). And food is taken care of for moving day on Saturday (I've prepared ahead of time), but then I'm a little bit worried about Sunday because I don't know how much we'll have unpacked or even if we'll have food in the fridge yet. I'll figure something out.

Moving day Saturday will be cool because there will be three gluten-free people there -- me, my aunt and my brother. We almost outnumber the gluten-eaters. Heh. I got tons of gluten-free snacks for everybody.

AndreaB Contributor
AndreaB
Posted
The u/s yesterday was interesting and kinda fun. Love it when I get trainees! No, really. Their energy and enthusiasm is really a breath of fresh air.

Sounds like a productive appointment. How long til you get the results of that?

I can see your apprehension on doing anything with Herbie right now. The second opinion sounds like a good plan.

I got my laser yesterday! Open Original Shared Link

So, I lasered for muscluo/skeletal in the afternoon, and organs/structures in the evening before bed. Last night I took half of my Ambien, then didn't wake up till 6AM! It was too late to take the other half, but I fell back asleep anyway. This is the first time this has happened in MONTHS! I always wake up about 3AM and take the other half!

Do you think it's a coincidence? I guess I'll see if it continues tonight. Normally if I can't take the other half, I lie there awake until I get up no matter how long it is.

I'm be looking for your updates on this too. :) I'm thinking it's not coincidence. :D

That may be what upset the balance, or it could be because of the Humaworm...when I wake up, I have the intense burning hunger that I used to feel...it may be the Humaworm or my H.Pylori may be back. :(

The extra practices could definately be throwing things off.

I hope it's not h pylori. :( How would you know.....

Moving day Saturday will be cool because there will be three gluten-free people there -- me, my aunt and my brother. We almost outnumber the gluten-eaters. Heh. I got tons of gluten-free snacks for everybody.

Hope everything goes well. I know moving almost always seems to take longer than we plan.

CarlaB Enthusiast
CarlaB
Posted
I really want to do the laser treatments too (although will probably NOT get one myself, lol)
It was only $200! Considering how expensive some of these treatments are, that seemed CHEAP! It doesn't do the LED stuff, but it does a lot. I'm excited about being able to do it on my own ... I can Rachel it, LOL.

In other big news, hubby and I are settling on our first house tomorrow.

Yippee! Congratulations!!!

confusedks Enthusiast
confusedks
Posted

Update...you know how the insurance company was going to pay for the iron IVs....well they are now saiyng there is a $3000 deductible for EVERY sickness! OMG!!!!!!!!!!! My mom is freaking out and she threatened to sue them, so we are now waiting for the case worker to call us back to see what she says.

In the middle of all of this, I posted on LN about the PICC line and everybody said the line needs to be flushed every 12-24 hours depending on the brand of PICC line! AHHH!!!! That's to prevent clots.....holy tolito! I haven't had it flushed since they put it in....now I'm really worried.

My mom put a call in to the Dr. to see if I can come in today to have them flush it, so we're waiting to hear back from them. Grrr! This is really freaking me out!

Kassandra

AndreaB Contributor
AndreaB
Posted
Update...you know how the insurance company was going to pay for the iron IVs....well they are now saiyng there is a $3000 deductible for EVERY sickness! OMG!!!!!!!!!!! My mom is freaking out and she threatened to sue them, so we are now waiting for the case worker to call us back to see what she says.

In the middle of all of this, I posted on LN about the PICC line and everybody said the line needs to be flushed every 12-24 hours depending on the brand of PICC line! AHHH!!!! That's to prevent clots.....holy tolito! I haven't had it flushed since they put it in....now I'm really worried.

My mom put a call in to the Dr. to see if I can come in today to have them flush it, so we're waiting to hear back from them. Grrr! This is really freaking me out!

Well, if that doesn't beat all. I really wonder what the point of insurance is if they don't pay anything. :angry:

I hope this gets settled quickly and that they pay for it.

Let us know whether you're able to get in today to have the PICC line flushed.

Offthegrid Explorer
Offthegrid
Posted

$3,000?!? That's outrageous!

confusedks Enthusiast
confusedks
Posted

Andrea,

I am going in today at 1.45 for the nurse to teach me how to take care of this crazy thing! My mom of course had a deposition today at 12.00, so she can't be there, but my grandpa will be there.

I don't know what the point of insurance is if they don't pay for anything.

Offthegrid,

I know! It is ridiculous! My mom is SO $%^&ing ANGRY!!!

Kassandra

CarlaB Enthusiast
CarlaB
Posted

Kassandra, I don't understand why they think it's unrelated to all your other health issues.

Today is the day last year that I got my IGeneX results. Boy, I've come a long way, huh? At this point I was taking vitamin C, salt, samento, and noni ... I did not see my LLMD until Jan. 20th and I started abx that very day.

Green12 Enthusiast
Green12
Posted
Today is the day last year that I got my IGeneX results. Boy, I've come a long way, huh? At this point I was taking vitamin C, salt, samento, and noni ... I did not see my LLMD until Jan. 20th and I started abx that very day.

Carla, what an anniversary! Exciting :D

Kass, :(

Hang in there dear!

What do you look for in a good brand of chlorella? Anything specific like where it's sourced from, etc??

AndreaB Contributor
AndreaB
Posted
Today is the day last year that I got my IGeneX results. Boy, I've come a long way, huh? At this point I was taking vitamin C, salt, samento, and noni ... I did not see my LLMD until Jan. 20th and I started abx that very day.

1 year already! That's great!

dlp252 Apprentice
dlp252
Posted
In other big news, hubby and I are settling on our first house tomorrow.

Woohoo! Congratulations! Moving is a pain, but in some ways it's great (if you can do what I CAN'T seem to anymore...get rid of stuff, lol).

I'm betting on the bananas for the upset. I can't eat too many bananas too close together.

I hope it's not h pylori. :( How would you know.....

I'd have to get retested again. :( I'm not sure which doctor I will see first...if my results have come in for my Neurosciences testing, then I'll probably see the HN doctors (for new posters, this is a medical clinic that Rachel first told me about shortly after I joined this thread). They are the one who tested me for it last time. Anna (for all you new posters...this is the same Anna that Rachel spoke of, lol) also did a retest several months ago, but I don't see her again until January...so it might come down to Dr. S, lol. I see him on the 17th.

It was only $200! Considering how expensive some of these treatments are, that seemed CHEAP! It doesn't do the LED stuff, but it does a lot. I'm excited about being able to do it on my own ... I can Rachel it, LOL.

:lol: That's true though. Sheesh, I've spent a fortune on all these treatments. I would like to try the LED first though. Maybe after the first of the year. Every little thing I can do at home would benefit the whole.

I am going in today at 1.45 for the nurse to teach me how to take care of this crazy thing! My mom of course had a deposition today at 12.00, so she can't be there, but my grandpa will be there.

Yay, I'm so glad you got in! I've read about the flushing on LN...yet another thing that scares me, lol.

Today is the day last year that I got my IGeneX results. Boy, I've come a long way, huh? At this point I was taking vitamin C, salt, samento, and noni ... I did not see my LLMD until Jan. 20th and I started abx that very day.

WOW, that's amazing...it seems like it just happened!

What do you look for in a good brand of chlorella? Anything specific like where it's sourced from, etc??

I know this, but I can't remember. :lol::P Seriously. :unsure::rolleyes::P:lol: I just remember a couple of brand names being mentioned on a couple of websites as good brands, so I bought one of them, lol. The one I was taking from Anna was $25 for a bottle that only lasted a week. I'm paying around $38 for a box at WF but that lasts me for several weeks.

confusedks Enthusiast
confusedks
Posted

Carla,

That's amazing! So...there *IS* hope...lol!?!!?

Everyone,

I went to the Hematologists' office and they flushed the PICC with saline and heparin (blood thinner). They have me going back tomorrow and in the meantime we are trying to set up a Home Health Nurse to come to my house, so they can teach ME how to do all of this stuff.

Of course when the nurse at the Dr's office called the insurance company, they said they wouldn't cover a HHN, so the nurse flipped out on them....lol. The insurance company must HATE us by now...lol! She told them that if they don't cover the HHN, I will end up in the Hospital with a blood clot and they will end up paying WAY more in hospital bills than if they would just send out a stupid nurse...lol!

She also said that if they were willing to cover the PICC line insertion, they must have realized that they need to keep it maintained.

I asked what we'll do over the weekend if they don't have a nurse come out before then, and they said they'll write a script for me to go to the ER to have them flush it. I won't be going back to the same ER....LOL!!

And, it DOES need to be flushed EVERY day!!!

Kassandra

AndreaB Contributor
AndreaB
Posted
I know this, but I can't remember. :lol::P Seriously. :unsure::rolleyes::P:lol: I just remember a couple of brand names being mentioned on a couple of websites as good brands, so I bought one of them, lol. The one I was taking from Anna was $25 for a bottle that only lasted a week. I'm paying around $38 for a box at WF but that lasts me for several weeks.

Julie,

I buy King Chlorella with Russian Immune Support online from Holistic Physician. It is $22.75 a bottle of 600 tablets of which for just me would last about 1 1/2 months. Dr. E has me taking 15 a day.

Of course when the nurse at the Dr's office called the insurance company, they said they wouldn't cover a HHN, so the nurse flipped out on them....lol. The insurance company must HATE us by now...lol! She told them that if they don't cover the HHN, I will end up in the Hospital with a blood clot and they will end up paying WAY more in hospital bills than if they would just send out a stupid nurse...lol!

She also said that if they were willing to cover the PICC line insertion, they must have realized that they need to keep it maintained.

I asked what we'll do over the weekend if they don't have a nurse come out before then, and they said they'll write a script for me to go to the ER to have them flush it. I won't be going back to the same ER....LOL!!

And, it DOES need to be flushed EVERY day!!!

Boy, it keeps getting better and better with your insurance company doesn't it. Good for the nurse for letting them have it. Sheesh. :angry:

CarlaB Enthusiast
CarlaB
Posted

Kassandra, of course there's hope! Several of us are right where you were just last year .... last year I was still over a month away from starting treatment. :) Don't get me wrong ... it's been a long year ... ;)

I agree with Donna's comment about the bananas ... I have no trouble with them at all, but hubby, who's not intolerant to anything, can get sick from bananas .... especially if they're a little green.

confusedks Enthusiast
confusedks
Posted

Bananas are hard for a lot of people. I used to NEVER be able to tolerate them at a.., but now I seem fine with them.

Donna,

The flush was fine, it doesn't hurt or anything. It's just the LACK of flushing that scares me the most.

Carla,

I found a recipe for "fudge balls" and they are REALLY good! They made me think of you...lol. :P

Kassandra

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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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