• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

Celiac3270's Endo
0

43 posts in this topic

Good luck, celiac3270! I hope so much that you get some answers to your continued symptoms.

I'll be thinking about you!

Gretchen

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Good luck, celiac3270 and Stacie. I will be praying for both of you.

0

Share this post


Link to post
Share on other sites

I obviously missed the beginning of this. Sorry to hear that celiac3270 will be undergoing this. I will add you to my prayer list and echo the other sentiments. :)

0

Share this post


Link to post
Share on other sites

hey good luck, i hope everything works out ok

0

Share this post


Link to post
Share on other sites

Yes! I've been trying for half an hour to get in....my internet connection was really screwing up for me. It's 7:30 in NYC now.....I had told you before that they wanted me at the hospital by 9:30 for an 11:30 endoscopy. Now, they want me early--8:30 at hospital for 10:30 endoscopy......

Anyway....it's the big day :).....I'll post when I get home, whatever -- unless the internet messes up on me, again.....

Thanks again

-celiac3270

0

Share this post


Link to post
Share on other sites
Ads by Google:


Hi,

The endo. ended a few hours ago, but I couldn't get on here until now to tell you. As I said, I had been having trouble with my internet connection. In my first endo, the doctor only took "one biopsy" of the intestines. This time I had a lot more samples taken....the doctor said that he took a few extra samples to check for any problems with lactose.

Obviously, it'll take awhile to get the official results of everything and get the testing of the samples done, but based on what he could see, the doctor said that the intestines were smooth without any "scallop marks". My stomach, however, looked red and irritated (red spots all over the inside of my stomach. We'll try to find out what's causing that irritation. There are no ulcers and nothing wrong in terms of appearance (besides redness and irritation in stomach).

I didn't feel that well coming out of it. Because it was a longer endoscopy, the nurse said that I probably got a lot of air into my stomach and therefore, abdominal pains, gas, and bloating would be perfectly normal. Additionally, I could experience nausea from the anysthesia. I have been nauseaous since I woke up and have had abdominal pains. The doctor actually thinks that the abdominal pains may be due to gas based on how I described them feeling, where they're located, and how I cope. Rocking back and forth dislodges the gas, curling over or putting a pillow over my gut are both methods of kind of squeezing it and therefore, pushing out the gas, and when it gets really bad, I often extend my bottom up into the air (sorry to get so detailed :D ), which the doctor said is the easiest way to get gas out. Anyway, it was a very imformative day, though I'm feeling the effects of the endo.. Last time I had no nausea, pains, vomiting, or anything and could have even gone for a run or something after. This time I didn't feel that good and it turned out that I had to wait three hours after getting to the hospital, so I ended up starting at 11:30, anyway, even though I arrived an hour earlier as they had directed due to someone else cancelling.

Oh, the doctor said that when the villi don't heal completely due to length of time with celiac disease and without treatment, sometimes the enzymes are damaged, as well....I can't explain it very well, but it could be that my intestines can't handle.....say, sugar...so he's going to find out about that when he reviews all the stuff......(you can't see the villi while doing the endo.)..........

Anyway, thank you for your support. I'll let you know when I get the official results back and until then, I think I'll just try to rest up and feel better.

-celiac3270

0

Share this post


Link to post
Share on other sites

Hi celiac3270.

Thanks so much for the update. I sure hope you start feeling better soon, you should feel back to "normal" by tomorrow, but your "normal" has not been that great. We all want to see you feeling great. Certainly something is causing the irritation in your stomach. Hopefully the doctor can help you figure out what it is.

Get some rest and feel better.

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Hi celiac3270,

Thought about you today at work, hoping all was well.....

I know results won't be for awhile, but I am glad you have it over with.....

Karen

0

Share this post


Link to post
Share on other sites

celiac3270, I thought of you today too. I am sure you are glad that's all over with, now you just gotta wait on the results which sometimes can be the hardest part.

Take care of yourself and feel better!

0

Share this post


Link to post
Share on other sites

Awww, celiac3270!

I am glad it is over with and maybe you will start feeling betterfrom the procedure.

0

Share this post


Link to post
Share on other sites

Thank you :D ....just vomited, but cramping and nausea are now gone....it's 9:06 and I have to go study for two tests.....thanks

0

Share this post


Link to post
Share on other sites

Hey, celiac3270. Just take it easy and rest now. Let us know what the results are.

0

Share this post


Link to post
Share on other sites

Hi celiac3270. I'm glad it's over as well. will be interesting to see what they find out. Never heard of just red spots all over the stomache. As one who had the stomache flue comming out both ends 24/7 for 3 weeks at a time every year growing up I DO HOPE you'll FEEL BETTER SOON!!!!!!!!!!!!!!!!!! ;)

0

Share this post


Link to post
Share on other sites

Thanks, everyone. I got my results! And I haven't been sick since the biopsy and that was from the anysthesia (yay! knock-on-wood). The doctor just called and said that:

- The villi are looking good! :D Healed and grown back

- No additional intolerances or allergies. :D

- Stay away from complex sugars and tomato sauce just to be safe, since I've been doing better without them.

- No ulcers

- No cyclic vomiting, cause the symptoms had been coming every few days instead of once a week -- very good.

- It's just a matter of a little more time. It's like a car at a high speed. The gluten-free diet puts the brakes on, but it still takes a little while to stop completely. I'm finally coming to that stop.

- The gluten-free DIET IS WORKING!

-celiac3270

0

Share this post


Link to post
Share on other sites

Just couldn't resist a chance to talk with the famous celiac3270. My name is Barbara and I have been lurking around the boards for a few weeks now. I just did the complete Enterolab thing today and sent it off. I have been eating gluten-free for about 6 weeks now and am just now thinking it is working. I had such tummy tenderness and pains in my stomach at times and that is just now going away. I have a granddaughter that is six who has confirmed celiac disease....she was so sick when she was one and just a healthy little specimen now. Her folks are very vigilant about what she eats and she is so brilliant about it too. Her mom is the one who suggested that I might go gluten-free and be tested because of some of the problems that I am having. I did have a blood test at the doctor's office which came back negative, but I certainly don't trust that. I have a son with ADD and I have fibromyalgia and I am convinced that there can be a connection between the two. I also think I may have a lactose intolerance as well as a gluten intolerance. I just don't want to get celiac disease so I think I will eat gluten-free to prevent that. I anxiously await the results of the Enterolab test....I bought the good one with the gene tests too.....hope I am not a sap. I did hear of a lot of people on these boards that used that lab before I went ahead and used them. I am the cook in our own restaurant which presents it's own challenges, but now I don't do any "picking" because all that food is "tainted"!!!!!!!! I do have some fries, occasionally, the day the oil is changed and before anything else is cooked in it....for a little treat. And here is the best thing, I am losing weight. My body really seems to like this way of eating. Before I was such a carboholic and now I just don't crave food that much....I am so much better in control of my eating habits and eating healthier. Best wishes to you, celiac3270, on your testing. I will keep up with you and this board. I am 59 years old and they say that fibro and gluten intolerance can set in during these years....Barbara

0

Share this post


Link to post
Share on other sites

congrats on the fabulous results! :-)

0

Share this post


Link to post
Share on other sites

Wow! That's WONDERFUL!!! I'm so excited for your good news -- and no new allergies, too! A good day, indeed.....

Joanna

0

Share this post


Link to post
Share on other sites

Hey celiac3270!

That is amazing news!!! I had a really rough day today so hearing some good news lifted my spirits a bit!!! I am so happy for you!

One day at a time, and slowly but surely the gluten-free diet will heal your body.....

Karen

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,800
    • Total Posts
      932,543
  • Member Statistics

    • Total Members
      64,291
    • Most Online
      3,093

    Newest Member
    1Newtothis
    Joined
  • Popular Now

  • Topics

  • Posts

    • 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.
  • Upcoming Events