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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.

Tiredofdoctors - Lynne
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106 posts in this topic

Lynne just phoned me to tell me the latest. She had an MRI of the brain yesterday and one of her doctors phoned to tell her that she is going to have a angiogram CT of the brain tomorrow. She has an aneurysm deep in the internal carotid artery.

We both knew from the first appt. that she would probably have to have brain surgery, but not to this extent. I had told her originally that after they shaved a small part of her head, she could do a comb over like Donald Trump. She laughed so hard over that. With this surgery, she will probably have half of her head shaved and she told me that she thought that afterwards she could dye that half black, wear blue lipstick and black nail polish LOL. Go with the punk look.

Lynne and I both believe that she will come through this with flying colors. She had one neuro doctor blow off her symptoms. Her cardiologist insisted that she see her other neuro immediately and made Lynne promise. Otherwise Lynne would have waited until her scheduled August appt. She kept her promise and everything has happened fast since then. So, we feel that this was meant to be caught, before it was too late.

She sees the neuro-surgeon next Tuesday with ALL X-rays in hand.

Please send good thoughts and prayers her way. If Lynne does not post, I will keep everyone up to date.

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I'll definately say a prayer for Lynne! If anyone can carry off having half her head shaved, it's her! :lol: Good thing she won't be able to talk during the surgery or the doctors wouldn't be able to concentrate ... her sense of humor through difficult situations is unbelievable.

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Metta:

If anyone could pull this off with some humor, it's Lynne. For those of you who don't know Lynne (she has not posted in a long time due to other health issues), she is one too funny chick. She is a giving and tenderhearted soul.

It's been a tough month for Lynne. Her beloved grandmother died last week at 101. I have been thinking about her every day. My thoughts and prayers are always with Lynne, Dave and her children.

Some of the neatest, coolest, loving friends I have, I have met here. Let's continue to do what we do here. Collective prayers, thoughts and support can carry Lynne a long way.

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Thanks for the heads up Armetta. We'll keep her in our thoughts and prayers.

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Prayer said! I'll keep praying.

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Armetta,

Thanks so much for the update. We really appreciate it.

Lynne, Hope you sign on and get to read these warm wishes for you. We all hope and pray for the absolute BEST for you. Please let us know what we can to to help....and know that we care deeply for you!

xoxo,

Laura

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I'll be thinking of her, too.

Pauliina

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I'm praying for her. Let her know she's missed on the board.

I'm sure she'll be able to pull off the hairstyle. I vote for blue with black ends. Very current.

Nancy

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I am also here. Please keep us inform of the progress.

I am honor to have friends like all of you.

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I will be calling her tomorrow so I will try to post an update also.....

If anyone can get through this, it's Lynne. She is one of the strongest people I know!

Karen

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I will be praying, too.

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Thanks, Metta for the post. I have had her on my mind lately and will keep her in my thoughts and prayers.

Lynne.......hang in there !! I am looking forward to your speedy recovery and brilliant , funny posts!

Ann

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Lynne, we're all sending you prayers, good thoughts, good vibes, positive energy, laughter, and love!

Here's to a speedy recovery and a punk hairdo!

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Lynne,

Can I call you Britney? ;)

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Adding my thoughts and prayers along with everyone. Keeping fingers corssed that everything goes well - and good thing for a second opinion!

Can I call you Britney?

:D:lol::lol::lol:

Good one Karen!

sandy

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Lynne,

Please know that we wish only the very best for you :) I will keep you in my prayers.

(Thanks, Metta)

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I will say a prayer for Lynne, she is such a sweet person.

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Lynne welcomed me so wholeheartedly when I first joined this forum, and made me laugh at my silly fears and unwarraranted complaints about my yucky new disease. I'm sending my prayers, too, Lynne, and hope I can return the favour by sending some laughter your way when you're back on here with us... :)

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I'm sending my prayers, too, Lynne, and hope I can return the favour by sending some laughter your way when you're back on here with us... :)

OMG YES!! Lynne has a FANTASTIC sense of humour!!!!

LYNNE!! (Britney ;) ) I know you can get through this with flying colours !! ----will be thinking of you :)

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((Lynne)) ~ saying a prayer for you!

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Thinking of Lynne and sending good vibes.

I vote for half blue/half pink with a fake tattoo on the shaved side. The fake tatto should be a "no grain" logo. ;)

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Of all the people that could use a break from all these health issues, Lynne is at the top of the list.

Say a prayer, keep her in your thoughts and send her plenty of cyber hugs.

Here is one from me Lynne

<<<<<<<<<<<<<HUG>>>>>>>>>>>>>>>>>>>>>>

p.s. I vote mohawk, like Mr. T - you need to show off the scar, it will give you colossol amounts of "street cred".

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I'll be thinking of her and praying also. She has been through so much and is such a help to others. I am so glad they caught this in time.

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I'm Baaaaaaaack!!!!!!!!! See, Scott didn't kick me off, after all -- mouth and everything!!!

Thank you guys so much for all the good thoughts.

I CANNOT be Britney -- I wear underwear, Karen. We won't go any further with that. ;)

Mohawk? Good possibility, Chris. Seriously, if you would see me now, you wouldn't believe how long my hair has gotten. I FINALLY have long, luxurious blonde hair (my childhood goal) and wouldn't you know it --it may have to be SHAVED OFF! I would get a lot of street cred if I let my scar show. Although, when I'm downtown at my doctors' offices now, and I go to the two stores that I like, I have to go through a really SKANKY part of town. The last time I was rollin' along, I came across two gang members -- individually. The first one was wearing a black hooded shirt, then a white hoodie on top. I could see the gun shoved in his waistband. He looks at me and says, "You'd better be careful around here, O.K.?" Then, I'm ambling along, come across another gang member (different gang -- different colors). He says, "Hey -- be careful, you hear me?" I told him I'd be careful. Have to say, even the wino's are really nice to me, though. I must have SOME kind of street cred down there!!!

Personally, I'm thinking this: If they can do a cardiac catheterization by going through the groin, then why couldn't they just thread that sucker a little farther up and send it on into my brain? :lol: Think about it -- they're ALL interconnected! :P The only problem would be that instead of branching off like they're supposed to (the OFFICIAL word is "bifurcating" -- just to pseudo-impress you guys), the artery that they think has the aneurysm does a triple loop before going on. See -- I even have talented ARTERIES!!!!!!!!! B) Either that, or they're just as screwed up as I am! I saw a shirt -- it said, "I finally got my head straight, and my body started falling apart." Story of MY life.

I'm, of course, still hoping that it ISN'T an aneurysm, that it just looks like it on the MRI / MRA, and that all will be right with the world again. Realistically, I don't know that I'm being realistic. My neurologist told me when he called -- when he was ordering the MRI and MRA that I should go into the neurosurgeon's office prepared to hear that I have to have surgery. Of course, I'm thinking that there is an impingement on my vertebral artery in the back of my neck, so I'm thinking that I'd just have to have a cervical spine disc removed. I just said, "Okay." in my cheery voice. Then he said, "Lynne, I mean that you need to be prepared that you may have to have BRAIN surgery." My voice wasn't so cheery this time. I just said, "Oh."

So, I do think we need to take a poll: If they have to shave my head, because it is going to be on one particular spot, then what should I do with the REST of it? We know that we have one vote for a mohawk, and I do particularly like the idea of the blue with the black tips. I could pull off Goth. I'd get a fake eye ring, fake lip ring, put a temporary tattoo on the shaved part. I personally think that could work. I would, however, have to shave an ADDITIONAL portion of my head, and I will, of course, film it so that I could be ALMOST as famous as Britney -- but still wear underwear. Don't want any papparazzi shooting pics of -- well, you know -- as I'm getting out of a car. Not only would it be in incredibly poor taste, but I am also a bit older than Britney! :lol::lol::lol: Yuck. Enough of that thought.

In all seriousness, I am scared. I really DO hope that it isn't an aneurysm. Unfortunately, I had the best neurology teacher there ever was, and I was tutored by the neurologist that is treating me when I was in school. Everything that I KNOW says that it is. I guess I'm just hoping that I'm wrong. Also, it's only 3mm. I don't know if that is large for an aneurysm -- I know it's not for large vessels -- it wouldn't even be CONSIDERED in some. I just don't know if it is large for small ones. I'm too scared at this point to look it up. I looked at the MRI films of the brain and cervical spine because I'm nosey -- like those who know me didn't know that. Then, I pulled ONE FILM out of the MRA, saw the "blip", which is what I'm preferring to call it right now, and said, "Holy S*#t." I put the film back in the package with the others, and I haven't looked at them since. That speaks volumes to me.

So, my grandmother must be helping me out. She had her stroke RIGHT AFTER my birthday party. We had walked in the door when we got the call that she had fallen. I went to the ER, and I told her that I knew what had happened, that I knew she could hear us and understand us, but that she just couldn't TALK because of the area of her brain that had gotten hurt. I told her that I promised she would be okay. She turned her eyes and looked at me as if to say, "Don't you DARE lie to me -- I'm your grandmother." When I visited her, I was asking her how she was doing, telling her she looked pretty -- she takes her left hand (her right side was paralyzed) and hits my leg. I kept talking, and she hits my leg again. I said, "I'm doing okay." Then she hits my leg AGAIN. I said, "Okay! They haven't been able to do the biopsy, because I'm arguing with the hospital over the insurance coverage. I'm taking the mitochondrial "cocktail" that the geneticist ordered anyway. I have to go back to the eye doctor in May. Is that enough?" She smiled and stopped hitting my leg! So now she is just making sure that the doctors find EVERYTHING that could be causing the trouble. It could be that, if they could get my left eye better, I could walk better and I wouldn't have so much trouble trying to figure out where everything is -- and I could get NICE new dishes without fear of dropping them off the side of the counter because I couldn't judge where it is! All my really nice dishes have had a number done on them. Sheesh -- such is life. (Karen, did you notice the Canadian reference???) It would also be really nice not to have so many bruises. I look like a battered wife. It's pretty bad. Also, I'm just tired of falling. At some point, it has become really annoying.

Thank you ALL for the prayers, good vibes, cyber-hugs -- I really appreciate -- and NEED them. While I'm keeping a really good bravado around here, I'm also really really scared. Of course, that won't stop me from cracking jokes all the way up until they put me under! I hope it's not one of those things where you have to be awake. OMG -- there is NO WAY I would not be able to keep my mouth under control. Remember the absolutely NO SENSE OF HUMOR nurses when I had my endoscopy and colonoscopy? Can you imagine if they're working on your BRAIN and not your BUTT?? The outlook for that would be bleak.

I still want a vote taken for shave styles -- the more creative, the better!

Love to you all,

Lynne

P.S. If you want my story about what an IDIOT I made of myself with the postman, e-mail me! :o

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WHAT A GOOFBALL!! :lol:

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
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