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Rachel--24

Omg...i Might Be On To Something

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Thanks,

I dont know anything about compounding pharmacies but will call around tomorrow. If this is something I need to do long-term I'm wondering if it costs more or does insurance cover it the same?

I have other problems as well as Gluten related stuff. From another support group they recommended a compounding pharmacy with a phone # 1-800-728-0288. Pharmacist name is Pete. Sorry don't know what city they are in but maybe he can answer your questions re: thyroid meds.

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How about eating it while you're in the tub? That way you never get THAT cold....?? B)

warm jammies huh? like what..... long johns? :P

-Dave

Oh my- My emoticons detect flirting and spatting! :P

And long Johns are AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

SUSIEQ_ Are you out there? Are you OK?

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Oh my- My emoticons detect flirting and spatting! :P

And long Johns are AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

SUSIEQ_ Are you out there? Are you OK?

Nothing beats flannel jammies right from the dryer! :rolleyes:

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Managed to get my blood work todya after THREE tries and let me tell you, that was like summitting Everest without supplemental oxygen. I cried each time upon discovering lab was closed or there were 15 people ahead of me. HOw crazy, to cry over that but I just had NO stamina and the world just looked hazy adn blury and my head felt full of cotton. So.....I looked at my lab slip. I"d asked the doctor to test ALL thyroid, T3, T4, everything, and she had not checked those boxes. :angry: So I DID. Harumph.

Of course we feel sorry for you, or along with you anyway. I personally KNOW what it's like to KNOW you shouldn't do something, but are compelled by some inner thing to do it.

About this blood work thing...that really frosts me. I've had the same thing happen to me and have THOUGHT about checking the boxes myself but have never actually had the courage to do it. Good for you! I've never been tested for the full thyroid panel even though I have a lot of symptoms that COULD fit with thyroid issues. I just don't understand it. This is another thing I'm hoping the HN doctors will do...test for the FULL panel.

Donna, they are ripping you off. Check another place.... MAX you should pay is like $60-75 an hour for labor, and your strut job for BOTH should only take like 2-3 hours MAX. Total labor should be like $200-250. PM me if you need anymore info...

Thanks! I can't remember what their hourly rate is, I'll have to look. On Saturday they probably worked on my car from 8:00 to 4:30...I had to have a door lock actuator replaced (well, didn't HAVE to, it worked manually, lol), and it was a major servicing (90,000 miles), plus the timing belt...I wish I could remember their hourly rates.

I'll call them to find out what the struts cost and then see how that works with the estimate they gave me.

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Good morning everybody, am reading these things in just the SLIGHTEST fog........and thank you, of course, for your sweet thoughts and wishes. BUT, GUESS WHAT HAPPENED???

NOTHING! :o

Absolutely nothing, no D, not even a poop yet, no gas, no tummy ache, NOTHING. I was asleep by 10, up at 7, and was expecting a siege around midnight (my reactions are about 12 hours later).

WHAT IS UP WITH THIS???? how could NOTHING happen??? I am so so so confused....... :huh:

still pretty tired though. might have to slip back into bed for a few.

you guys are awesome.....brain is in such a fog so I don't remember who is doing what....appts. this week, Laura started her new job and they are wonderful? BEv's seeing a.....physiatrist? psychiatrist? what wasit? and is our Rinne gone now? I am confused.....

*yawn* not sure I should be awake yet.......

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I have other problems as well as Gluten related stuff. From another support group they recommended a compounding pharmacy with a phone # 1-800-728-0288. Pharmacist name is Pete. Sorry don't know what city they are in but maybe he can answer your questions re: thyroid meds.

Just wanted to say hi! You were really brave to go back to April, lol! Welcome to our little thread!

Rachel, looking forward to hearing about your appointment today!

Laura, great first day on the job!!! Hopefully it won't be so exhausting from now on...I think first days tend to be like that even in the best of health, lol. :P

Julie, I agree, accupuncture counts, lol. I was tested through Enterolabs too...definitely worth it in my case.

Susie, morning! Don't get too excited about the lack of reaction. Trying to remember back to my Krispie Creme fiasco a few months ago...I think it hit me almost two days later...course I only had half a donut. :P

For you the brain fog is probably a LOT worse because of it though.

Bev, yay on the testing.

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Good morning everybody, am reading these things in just the SLIGHTEST fog........and thank you, of course, for your sweet thoughts and wishes. BUT, GUESS WHAT HAPPENED???

NOTHING! :o

Absolutely nothing, no D, not even a poop yet, no gas, no tummy ache, NOTHING. I was asleep by 10, up at 7, and was expecting a siege around midnight (my reactions are about 12 hours later).

WHAT IS UP WITH THIS???? how could NOTHING happen??? I am so so so confused....... :huh:

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Just a drive-by....wanted to say hi to all!

OMG...work is killing me!! I'll be glad when the stupid Show & Tell is over. :angry:

The store is "suppossed" to look like a picture in a magazine....throughout. Right now its looking like a tornado went through. :blink:

I'm embarrassed for my store. :ph34r: My dept. and the produce dept look good but I hope the rest of the store catches up. Only one day left. :unsure:

Julie...it is Bioset that I'm doing today. I went to the website to printout my new patient forms and saw the info. about the test. I guess its exactly what you had done. My appt. will last for 1 1/2 hours....I may have to go to bed right after cuz of having to get up really early but will let everyone know ASAP.

Doesnt Donna have an appt. today? Who else?

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Um, did I even bother to mention in my post what I did? that I ate three donuts? yeah. that's right.

still nothing. go figure. Yes Richard, DONUTS ARE GOOD FOR US!!!!! :)

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Susan,

Hope you don't get too sick from this.....of course if you need to be sick to avoid gluten, well then, I would hope you'd get sick enough to realize you can't go back to gluten. :o:ph34r:

You aren't going to think gluten won't hurt you are you? :unsure:

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Thanks everybody for all the input about Enterolab testing. I didn't realize they did it all through poop, er, stool sample :lol: I was thinking it was blood draws for some reason.

I am thinking about doing the whole shebang option, but I am confused as to if it also includes soy and egg in it...

Susie, everyone said it all so well last night, lots of love and support to you through this difficult time. Hang in there, hope today is a better day :)

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Doesnt Donna have an appt. today? Who else?

Yep, Donna does and I get T, M and M's allergy/intolerance test results back today.

Who knows when, I'm waiting for a call from a delivery I'm expecting, some frozen food that will be mush if I have to catch him on his way back down this way this weekend. The driver is not usually up here too early. At least the doctor is totally flexible.

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Just a drive-by....wanted to say hi to all!

OMG...work is killing me!! I'll be glad when the stupid Show & Tell is over. :angry:

The store is "suppossed" to look like a picture in a magazine....throughout. Right now its looking like a tornado went through. :blink:

I'm embarrassed for my store. :ph34r: My dept. and the produce dept look good but I hope the rest of the store catches up. Only one day left. :unsure:

Julie...it is Bioset that I'm doing today. I went to the website to printout my new patient forms and saw the info. about the test. I guess its exactly what you had done. My appt. will last for 1 1/2 hours....I may have to go to bed right after cuz of having to get up really early but will let everyone know ASAP.

Doesnt Donna have an appt. today? Who else?

I forget who's appt is when :lol: Andrea was keeping better track. Oh you, it's you that has the appt Rachel!!!!!

Sorry work is so stressful, hopefully it will all be over soon.

Bioset- I was suppose to start it, but didn't. I just had the NAET. Bioset is based on the same principles but better, so I hear. I'm excited for you :D . It might really help with the over all load of intolerances. Keep us posted.

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I am thinking about doing the whole shebang option, but I am confused as to if it also includes soy and egg in it...

Julie, The whole shebang gluten full for $369 includes malabsorption, IgA antibodies, ttg, genes and inlcuded Dairy when I got it (might still). The soy, egg, yeast are an additional $199.

Well worth it if you can swing it. If you don't want to do the gluten option you can search around and put together what tests will suit you. They have different packages.

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Julie, The whole shebang gluten full for $369 includes malabsorption, IgA antibodies, ttg, genes and inlcuded Dairy when I got it (might still). The soy, egg, yeast are an additional $199.

Well worth it if you can swing it. If you don't want to do the gluten option you can search around and put together what tests will suit you. They have different packages.

So then it really isn't the whole shebang :lol:

I was hoping it included all the individual tests listed under it <_<

Another question, does it still pick up on the gluten issues after someone has been gluten-free for a long period of time?

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Julie.....it depends on how long is a long time. Over a year...I would say no....under 6 months probably ok...anything over 6 months might be "iffy".

I was 4 months gluten-free when I took the test.

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So then it really isn't the whole shebang :lol:

I was hoping it included all the individual tests listed under it <_<

Another question, does it still pick up on the gluten issues after someone has been gluten-free for a long period of time?

They say their test can pick up the antibodies for up to a year I think. It would probably depend on how much damage there was to begin with and how high numbers would have been.

You've had dairy and lecithin lately (don't know if lecithin would register though). Have you had eggs?

How long have you been gluten-free? Have you had cc issues with gluten recently?

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Doesnt Donna have an appt. today? Who else?

Yep, me at HealthNow after work.

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Thanks everybody for all the input about Enterolab testing. I didn't realize they did it all through poop, er, stool sample :lol: I was thinking it was blood draws for some reason.

I am thinking about doing the whole shebang option, but I am confused as to if it also includes soy and egg in it...

I got the egg test...did not show an intolerance in my case. The gene test is done through swabs of the inside of your cheek (on your face, lol).

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I can't keep track of all these appointments- so Donna good luck with yours today. Let us know what happens. And a big hug for luck!

Dingo- Are you sure that in your fog you didn't mistakenly eat three gluten free donuts???????????? I hope you'll be OK. Don't EVEN think about doing it again though.

Rachel- I'll be glad when the store thing is over for you!

I feel so GRUMPY today. It's been coming and going. Some days I am in a great mood and other days I am such a bi-ach! I don't even want to be around myself. I don't know what it is. I'm psyched we moved but unpacking is a pain (it was fun for the first week). You know how some days EVERYTHING (like putting your underwear on the right way as opposed to backwards!) FEELS LIKE SUCH a BIG DEAL.

Haurumphhhh....maybe I should go get a dog! :D

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You know how some days EVERYTHING (like putting your underwear on the right way as opposed to backwards!) FEELS LIKE SUCH a BIG DEAL.

Haurumphhhh....maybe I should go get a dog! :D

My daughter has the same problem. We buy her the ones with the little bows on the front. It seems to help :)

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Dingo- Are you sure that in your fog you didn't mistakenly eat three gluten free donuts???????????? I hope you'll be OK. Don't EVEN think about doing it again though.

I feel so GRUMPY today. It's been coming and going. Some days I am in a great mood and other days I am such a bi-ach! I don't even want to be around myself. I don't know what it is. I'm psyched we moved but unpacking is a pain (it was fun for the first week). You know how some days EVERYTHING (like putting your underwear on the right way as opposed to backwards!) FEELS LIKE SUCH a BIG DEAL.

Haurumphhhh....maybe I should go get a dog! :D

Bev:

1. I assure you they were from a gluten-donut store.....gluten everywhere...walking in, the smell was heaven...

2. Yes, underwear with bows on front for you.....I am sorry you're so grumpy! you've been through a lot and dang, get that unpacking done so you can at least have a bit of leisure time....to eat donuts and such.

3. Yes, yes, a thousand times yes, GET A PUPPY!!! but then again NO NO NO.....all the training, the cleaning, and the loss of freedom, the ruining of the yard and/or house (shoes at least)....the crying at night for the first few weeks......I don't know. Your life is complicated enough....wait until things settle down a bit, maybe?

Laura - good news! wow....a job like that - - - what a blessing.

Donna - yes, we await news of your appt!

Rachel - is the heinosity over yet?

Andrea - thanks for being so mother hen-ish. :) and I know you'll let us know how tomorrow's testing goes.

What else.....I forget everything else....Julie - there was something....I don't remember. :huh:

Not sick at all from the donuts. go figure. My experiment came out wtih entirely different resutls. Feel pretty fabulous today, in fact.....oh no.........does it mean..........eat more gluten??? :lol:

(jsut kidding) Well....feeling NORMAL today - - yesterday was just off-the-scale bad. I don't know why.

Well I am off to flirt with the guys down the street laying sod and see what they do with leftover gras. ;)

p.s. I did post my funny poison oak story on the "I ate gluten and nothign happened thread. Bev - you will enjoy it. :)

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Hi Laura--

I'm getting dinner ready--the guys will be home in a minute but when I saw you posted, I had to see how you did today :D

I can well imagine it's taking a toll on you, but at the same time it must be exhilerating to be back in your "element"! I'm so happy that you were able to work something out with this company--and how wonderful they have been to you! I'm just so glad that you didn't have to give up your dream job while trying to figure out your health concerns.

Thank goodness for your mom! What an incredible help she is to you--doing all of the "little things" to make sure you are able to work right now.

Good luck tomorrow! I'm excited for you :D Let us know--even if you're tired just to let us know you're ok ;)

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3. Yes, yes, a thousand times yes, GET A PUPPY!!! but then again NO NO NO.....all the training, the cleaning, and the loss of freedom, the ruining of the yard and/or house (shoes at least)....the crying at night for the first few weeks......I don't know. Your life is complicated enough....wait until things settle down a bit, maybe?

Don't forget the endless hours of staring they do...they just stare at you, lol.

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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • Summer time is among us, and not every one has the local Gluten Free ice cream catering like I run or make your own SO I found this recent list of gluten free frozen treats. They have the listed allergens, and even gives you list of dedicated facilities.

      Ice creams
      https://www.spokin.com/top-celiac-and-allergy-friendly-ice-cream-brands?

      Popsicle
      https://www.spokin.com/top-celiac-and-allergy-friendly-popsicles?
    • Hi,  The anemia was most likely caused by celiac disease damage to your gut lining (villi).  The damage caused by celiac disease affects absorption of nutrients including vitamins and minerals.  So your body will begin to decline as it won't be able to properly function without adequate amounts of many vitamins and minerals. Also your immune system will begin working overtime to produce antibodies to gluten on a continual basis.  That's a bad thing as a ramped up immune response may develop reactions to other foods you eat.  I can't eat dairy, nightshades, soy, carrots, celery, and other foods.  All these other food intolerances most likely developed because my gut was irritated and inflamed from eating gluten for years and not knowing I had celiac disease. The forum software used to have a signature footer that showed up under posts.  Many members listed their additional food intolerances in the signature footer.  There are a lot of celiacs who had additional food intolerances develop. Since your immune system is going to go crazy trying to "fix" the problem, you can expect your other AI condition symptoms to get worse.  That is not good. Just because it is hard to do doesn't mean you shouldn't do it.  Eating gluten-free does get easier over time if you stick with it.  You can get used to eating different foods and even like them.  There is plenty of naturally gluten-free food out there.  It does take some adjustment and maybe a little adventurous spirit to eat and live gluten-free.  But the payoff is great in health and wellness. If you ate gluten-free for 3 years you can eat gluten-free for 5 years.  And 10 years etc.  You know you can do it because you already did it.
    • The gluten challenge is 12 weeks of eating gluten for the blood antibodies tests and 2 weeks for the endosocpy.  There is also the test for DH (dermatitis herpetiformis) which is a skin biopsy.  DH causes a rash on the body, often in a symmetrical pattern.  The IgA antibodies are deposited in the skin and cause the rash.  They test for DH by taking a small skin sample from next to a lesion, not on a lesion.   Going to a dermatologist who is familiar with celiac disease/ DH could be an option. Check around your area to see if you can find a dermatologist that other people with celiac disease and DH have seen.  Sometimes hospitals have celiac support groups and you might find some doctor recommendations from them. Celiac disease is not easy to diagnose but if you aren't eating gluten it is pretty much impossible to diagnose.  That may change in a few years as there were new tests being talked about that may be able to do diagnosis without a gluten challenge.  But they aren't available yet.  
    • Might be your new regular, if you went to a whole foods diet with plenty of veggies, etc. And less processed crap your getting more fiber. I used to get constipation before going gluten free....yours could be a similar issue but just 2 months is a rather short time. Many times constipation is brought on by magnesium issues, healed gut, etc. can fix this,

      Other thoughts, are you consuming a lot of fruits, juices, taking vitamin C. Frequent bowl movements could also be your getting your upward threshold of vitamin C. You could be getting more fiber then your used to.

      Or you could be getting a light gluten exposure from a condiment jar/butter tub with crumbs, or a pan with scratches you did not throw out. Ate outside your own house? Do check the newbie 101 thread to see if you missed anything.

      Any other information you can tell us? Like what you eat, Do you see pieces of undigested food? This could be a enzyme issue or a gut biome issue.
       
    • Sure.  That could be normal for you.  2 months isn't that long to heal and get everything regulated.   It may be different 2 months from now.
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