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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Do You All Think About Idea That All Grains Must Go For Many To Heal?
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24 posts in this topic

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....

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While there are some folks here that are totally grain free I didn't have to go that route. I just dropped the gluten grains and healed well although it did take some time and eliminating soy before I fully healed, well as fully as I will heal anyway.

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While there are some folks here that are totally grain free I didn't have to go that route. I just dropped the gluten grains and healed well although it did take some time and eliminating soy before I fully healed, well as fully as I will heal anyway.

So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)

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I did classic gluten free for two months. I was still having alot of dizzy/fatigue symptoms. I went grain free. I am still pulling out of withdrawl after two months. But I feel better. I have energy and am not tired without a good reason to be.

Now, I am seeing some things that I am reacting to. The smell of rice cooking caused my neck glands to swell. Crumbs of gluten bread caused a rash.

I needed to be grain free, for my body to heal-and maybe forever.

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(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains,

I'm curious how this was tested.

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So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)

I think this whole idea that you have to give up all grains to heal is pure horse-pucky, for most Celiacs. I was the same as you....my numbers were off the charts and I refused the biopsy as I was so very, very ill at the time of diagnosis. Actually, I have as little to do with doctors as humanly possible and I have healed fine. How do I know this? I have 3 other autoimmune conditions from long term, undiagnosed Celiac and they are doing a lot better also since diagnosis and my following a strict gluten-free diet. All of my inflammatory markers are coming down also, with each blood work I have done so if that isn't enough to convince me, I should hang it up. Unless I'm bleeding from somewhere, no one is scoping me. The doctors already made enough mistakes with me and I don't trust them.

Not all Celiacs are alike and each person has to figure out which is the best route to follow when trying to heal. I am happy you feel better but you might be able to add some grains back in at a later date....if you want to. Just make sure your diet is as balanced as possible because you can develop nutritional deficiencies from cutting out all grains.

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Trying to find a solution for my problems, I started on SCD. But being dairy intolerant, it wasn't the right diet for me. From there I went onto anti-Candida Diet and ended up on Paleo. I must say, I have never felt so good as on the Paleo diet. It was absolutely great.

However, after 4 months, I had to stop the Paleo diet, to go on an horrible 2 month gluten-challenge for my endo.

I truly believe the Paleo diet is the best way to allow your intestines to heal.

No starch/dairy/sugar/legumes/alcohol, no ready made stuff full of chemicals, just plain whole food.

Only problem I had with the Paleo diet was the weight loss. I'm waiting to gain some weight, in order to be able to go on Paleo again.

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So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)

I didn't have a biopsy until five years after diagnosis and I had healed well by then. My doctor diagnosed me without a biopsy because he demanded a gluten challenge which came close to killing me. Literally. The day of the biopsy I was laying on the bathroom floor bleeding.

If grain free is working well for you then keep it up. You can always try adding some of the gluten-free grains in after you have been doing well for a few months if you miss them.

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I'm curious how this was tested.

I am, too. You said "a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that"

What test was performed?

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Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac...

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this.

Thanks for weighing in....

I'm curious too. It concerns me that it is taking a long ttime for some people to heal. This makes me wonder if there isn't something in addition to the usual "wheat, barley, rye and sometimes oats" elimination that has to take place.

As a trial, I have eliminated corn - this pains me more than eliminating wheat, to be honest. I miss a bowl of popcorn more than bread! And yet, I feel even better! More clear minded. Less panic when dealing with the daily grind. Far more patient, when I didn't think it was even necessary. Can it get even better? I'm willing to try cutting out more. One thing at a time - the skeptic in me is open minded. :D

Did your acupuncturist use muscle testing for other grains? Our energy system is quite complex, isn't it.

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I went grain-free for a while. It didn't seem to make any real difference for me except for rice. White rice did a number on me, but that is probably a sugar related problem not due to the grain aspect so much, but the fast acting carbs. Grains are often used in baked goods and can have blood sugar affects due to the glycemic index being high. So you may get relief form going grain free but it may be a blood sugar thing instead of a grain thing. Just mentioning it so you keep an open mind about it.

I don't do well with flax seeds though, or any unground seed shell like pumpkin seeds. Tears me up it does.

The other thing with brown rice is they say it has some arsenic in it. Mostly in the hull. So that is another possible impact from a grain. There was a story about that not long ago basically warning people (including celiacs) to beware of eating too much brown rice, due to the arsenic levels.

The other bad thing about grain is it can get stuck in between your teeth, and that is very unsightly. And if it is out in a field it does attract crows. But you can make those seed grains paintings with it, so it's not all bad.

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Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....

Currently the research says celiac gluten intolerance is related specifically to certain grains including wheat, rye, barley, spelt (and a few others), but not to other grains such as corn, rice, or millet. As far as I know, there is no scientific research pinpointing other grains as culprit in celiac disease gluten intolerance.

However, I think recovery and tolerance of non-gluten grains likely depends on a person's overall state of health. There can be a lot more than just the issue of gluten intolerance when someone has celiac disease - there can be concomitant issues of microbial dysbiosis or other inflammatory or allergic conditions causing additional digestive problems that may interfere with healing. Any chronic inflammation will interfere with healing. Period. It is a very complex issue involving food biochemistry, immunology and microbiology and will certainly not be clarified until much more research is done, especially in the field of bioinformatics.

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I've come to think that we each have our own, individual optimal diets. Whatever strengths and weaknesses our genetics gifted us with, whatever injuries we've sustained in life, whatever we're exposed to in our environments - it's all going to have an effect on what diet does best with us, IMO.

The gluten free diet is a clear one for all us Celiacs, but the grain free one, not as much.

However, we're all competent adults, and usually ones who pay attention to our health because we've had to do so. It seems to me that some people do just fine with grains, some people are knocked flat by 'em, and they are typically aware enough of their own bodies to tell the difference, you know?

Whether it's the grains themselves, or GMO issues, or pesticides, or whatever, if it works for some people to avoid it, more power to 'em. God knows I've struggled enough to figure out my ridiculous body that I'm always happy to support anyone who's found the answer to their own health issues. :D

As for myself, if I eat grains, I'm sick. My kids' health issues are much better when they have a low-to-no grain diet. Previously, when eating grains, I had vitamin deficiencies and other medical problems that wouldn't resolve until I made some major dietary changes, including going grain free.

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T H and WOODNEWT

Your thoughts certainly sum up the "wild adventures of being a celiac". :)

Individuals have different recovery times and different "guts" and

health situations and we need to choose what works best for our own bodies.

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I am basically grain free ,except rice and occasionally corn.

I was considering switching to brown rice until I read this :P

The other bad thing about grain is it can get stuck in between your teeth, and that is very unsightly. And if it is out in a field it does attract crows. But you can make those seed grains paintings with it, so it's not all bad.

Honestly I dont know anymore , some times I feel like food is trying to kill me :ph34r:

My PCP wants me to limit my carbs (possible insulin resistance ) for the next 3 months . So depending on my labs I may go totally grain free.

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I am basically grain free ,except rice and occasionally corn.

I was considering switching to brown rice until I read this :P

Honestly I dont know anymore , some times I feel like food is trying to kill me :ph34r:

My PCP wants me to limit my carbs (possible insulin resistance ) for the next 3 months . So depending on my labs I may go totally grain free.

Ha Ha Chili, there are so many possible problems with grains! :D Well, anyway, here is a link to a short news story about the brown rice and arsenic link. There are lots of hits on it you search on brown rice and arsenic.

Brown rice may contain toxic arsenic levels, study shows

Brown rice -- and anything made with brown rice syrup --could be a source of potentially toxic arsenic, according to research by scientists at Dartmouth College.

...

The research team found that dangerous amounts of arsenic were in organic powdered toddler formula whose top ingredient was brown rice syrup, ABC reported. The formula contained six times more arsenic than the Environmental Protection Agency considers safe for the water supply, they reported.

...

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I have to say that I read that report when it came out and I am a bit skeptical.

The report uses words like "may contain" and "can".

There was no follow up and I did not see a sudden recall of brown rice products or infant formulas.

So, how can we really know? :unsure:

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Count me in as another one who has had to give up all grains. It's disappointing, to say the least, but I can't seem to keep my energy levels up or my hormones in order while eating any grains. I've been paleo for almost a month and my emotions are also the most stable they have ever been in my life. Who knew?

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Yes! Going grain free is a must, IMO.

I didn't start to see any significant improvement until I went on a paleo diet. It was so quick and so dramatic when I did. My brain fog was GONE, and my muscle spasms and joint pain soon followed.

This supplement was also helpful: RepairVite

And recently I just started taking cod liver oil and liquid chlorophyll, which has helped even more.

After being on the diet for about a year, I've been able to "cheat" some of the time and have some wine, sugar, goat cheese (but never cow!) However, I am never going to touch grains again. When I eat them I feel foggy-brained, gassy, and my body starts to hurt again.

Best of luck to you, I hope the diet helps!

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This thread just makes me want to cry. I am vegan already (no meat, no dairy, no eggs). And I'm thinking of cutting out soy to see if it's bothering me.

Cutting out all grains?? No rice? No rice noodles? No quinoa or quinoa noodles? No gluten free breads or gluten free waffles or gluten free baked goods? No gluten free pizza?

I would be down to fruits, vegetables, and well, that's it. Fruits and vegetables. And beans. I admit I can see how this would probably eliminate any reactions. But I would feel deprived and hungry.

Anyone else tried this diet? Fruits, veggies, beans only?

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This thread just makes me want to cry. I am vegan already (no meat, no dairy, no eggs). And I'm thinking of cutting out soy to see if it's bothering me.

Cutting out all grains?? No rice? No rice noodles? No quinoa or quinoa noodles? No gluten free breads or gluten free waffles or gluten free baked goods? No gluten free pizza?

I would be down to fruits, vegetables, and well, that's it. Fruits and vegetables. And beans. I admit I can see how this would probably eliminate any reactions. But I would feel deprived and hungry.

Anyone else tried this diet? Fruits, veggies, beans only?

Unless you have an added allergy to a particular grain or have noticed reactions after eating grains, there is no need to give up all grains to heal. It is most definitely NOT a requirement to healing and anyone who tells you that is wrong. Some people need to do so but you can have gluten-free pizza or bread when first diagnosed and have it not be a problem. I think the worst thing one can do is obsess about that to the point where they feel deprived. Relax and eat what you want in your diet that fits your particular needs. If you try something new and have a problem, then cut it out and try again down the road. You'll be fine...really! :D

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Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....

I am grain-free......had been gluten-free a year and still having random issues and was tired of being sick.....it was like their was a fire in my body and one part of my body was being attacked at a time. I knew my diet was clean, kitchen clean, I wasn't eating out and I took all the steps for CC at home. I also knew I was sensative to sugars so I went 8 weeks without sugar and grains to get my body a chance to heal and it worked. I felt amazingly better.

Giving up gluten was the hard one for me but giving up grains and sugar really was not hard. I am now almost 4 months into this. I will allow an occasional french fry and I will eat tortilla chips with salsa if I am out so if I take in any grains now, it is in very limited amounts and I am doing very well.

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I'm curious how this was tested.

have a talented acupuncturist who adapted NAOT to her work (she has had incredible success curing food allergies)....uses muscle test for sensitivity. More than anything, I wanted to know how much worse it was than my allergy panel was showing (what about all the "pre allergy" sensitivities if i had THAT many allergies? I had a ton). Turned out, I was sensitive to every single grain she could test, so taking them all out made sense for me.

To everyone else - I probably should have indicated that this is being looked into when gluten-free diet does NOT work for people. I think there is a camp of believers that feel that all Celiacs should probably be off all grains, but I think they are jumping the gun ahead of the hard research (which is slow in coming, as we all know). Definitely some of us are finding this to be true, but if others are healing on grains, more power to them! (have an Udi's muffin for me!!) For now, I think it's something to be aware of, maybe look into if your symptoms are not alleviating and you think you could do it....but I don't think every Celiac should stop eating grains! (although, keep an open mind of you are not symptom free yet - if you would have told me I'd be doing this one year ago I would have broken a rib laughing so hard - and I didn't have all the regular GI symptoms that are easy to track, and Celiac went undiagnosed into my 40's with all the autoimmune stuff that's more elusive and hard to stop, and I am feeling a difference finally)

And for those who want to try, I've found no information that implies that grains are necessary to the human body (humans systems evolved NOT eating them, so it could be the predominance of processed and engineered grains in our diet since young age that could be the issue). So for those who feel they need to cut them, but worry about idea that they are hurting their health - the research I am currently finding would indicate that the human liver provides MORE than enough glucose to cover the daily needs of the brain...and the introduction of a LOT more in a grain heavy diet causes such an insulin reaction in the body, there is just as big an argument that it is bad for you. But we do tend to hear what we want to hear, so there may be other studies debunking this out there that I'm overlooking. ha.

Also interesting, is that I was only a "healthy grain" eater for the last 10 yrs or more....and that's when celiac kicked into high gear for me. So it wasn't just going from Wonder bread diet to Paleo...I switched from an already incredibly healthy and rounded diet with healthy meats, whole grains, fruits and veg, and felt a difference right away, so go figure.

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I am grain-free......had been gluten-free a year and still having random issues and was tired of being sick.....it was like their was a fire in my body and one part of my body was being attacked at a time. I knew my diet was clean, kitchen clean, I wasn't eating out and I took all the steps for CC at home. I also knew I was sensative to sugars so I went 8 weeks without sugar and grains to get my body a chance to heal and it worked. I felt amazingly better.

Giving up gluten was the hard one for me but giving up grains and sugar really was not hard. I am now almost 4 months into this. I will allow an occasional french fry and I will eat tortilla chips with salsa if I am out so if I take in any grains now, it is in very limited amounts and I am doing very well.

This is so good to hear!! I'm so glad you've had that kind of luck!

I've been at this only 2 months, but can feel already that this was the correct road, and I started down it with intention of it being for the rest of my life - not a diet, not a fad. I've not been able to give up the sugar completely (and it's only hidden sugar in stuff like coconut milk and dark chocolate)...but am working on that, and was hoping I could kind of sidestep the strictness there (time will tell if that has to go too). What you just wrote gives me so much encouragement to look forward to a time when it doesn't need to be so strict!

But yes, strangely, the first 9 month of being gluten free were MUCH more difficult to do that Paleo....it was like eating was all about what you "couldn't" have. What "replacements" to make for "IT." I started to get depressed, even though some symptoms were lessening. Now, I'm enjoying food so much more...it's all about this amazing quality, and really FEEDING my body. Nothing that goes in should bring anything but health and joy - I think I cook more like a chef now, buy everything fresh and local and look for new ways to enjoy and prepare it. I have an indulgent treat (macaroons or dark choc) when I need so I don't feel like a total caveman... That's a huge change from the sugar and carb loving human I used to be. Maybe I'm enjoying some of those benefits that are supposed to come with age? ha. Hope so.

Thanks for the post!

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      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
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