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cyclinglady last won the day on October 14 2020

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About cyclinglady

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    DGP IgA positive only, Marsh Stage IIIB
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  1. There is so much to be discovered by medical science regarding the human intestinal tract!   Let's face it, it is not a glamorous topic!  The best we can do as non-doctors is to maintain our medical records, read current research that may aid our doctors (they are humans after all)  and continue to advocate for ourselves.  

    I wish you well!  Welcome to the forum!  Read the great tips about cross contamination, avoiding processed foods while healing, etc. at "Newbie 101" located under our "Coping" section.  If you are going to be gluten free, then make sure you really are gluten-free!  :D

  2. Okay, at least your GI has ordered some standard tests.  It is too bad that during your endoscopy, he did not take four to six biopsy samples to test for villi damage caused by celiac disease.  And that he tested you for celiac disease when you clearly had been gluten free for some time.  Well, in his defense, he may have tried testing in the hopes that you were still getting gluten into your system via cross contamination. Talk to him/her about remaining gluten free.  A gluten challenge for a celiac disease retest may not be in your best interests right now while you are so sick with SIBO.  

    I do not know enough about SIBO to help you.  The rashes you are experiencing may be related to SIBO.  I understand that it is really hard to recover from it.  Patience is critical (same for celiac disease healing)!  Try to stick to the SIBO diet while addressing the lactose and fructose intolerances.  Give it time (like six months) before you switch diets as it sounds like you are desperate and are trying everything!  

    PUB MED is a good resource tool regarding SIBO.  




  3. Well, here is good news!  MD Magazine recently published an article that discusses celiac disease and the possible risk for dementia.  Originally published in the Journal of Alzheimer's Disease, the article basically states that the risk for dementia does not increase before or after a celiac disease diagnosis.  Nice to read something positive!  I know it is just one study, but I'll take it!  



  4. We can not really diagnose you over the internet, but I do sympathize with you!  I can guess about a few things.  You are absolutely right that you can not rule out celiac disease when you were gluten free when your doctor ordered the test.  It is obvious that your doctor is not celiac savvy.  My neighbor is an ER doctor.  Can anyone possibly remember everything from medical school?  Heck no!  He relies on Dr. Google along with his extensive training and years of experience.  You would think your doctor would look up diagnostic procedures for celiac disease.   Ugh!  The 8 to 12 weeks is based on the top celiac doctors and researchers!  


    Some patients can not handle a gluten challenge for 8 to 12 weeks, so sometimes the time is less, but it is never for a few days!  It takes time to build up antibodies in the body.  It takes less time to set off the autoimmune response causing intestinal damage.  Therefore, a gluten challenge prior to an endoscopy is 2 to 4 weeks.  

     Meat allergy?  Possible.  But usually you react to one kind of meat like poultry, fish or pork (not sure what your definition of meat is....).   Maybe, just maybe, you are lacking enzymes (due to SIBO or celiac disease) that allow you to digest meats and other foods (food intolerance).   What tests were given for SIBO or is that just another "guess" by your doctor?

    Are you seeing a medical doctor?  What tests were given to determine a lactose intolerance or fructose malabsorption?  

    SIBO is not to be taken lightly.  You can have both celiac disease and SIBO and intolerances.  You could have allergies or allergic type reactions (regarding your rash and throat tightening).  You should ask to see an allergist.  

    You are obviously ill.  I hope you can find a doctor who can help you!  I would not rule out celiac disease at all!  I wish you well!  


  5. Hi Cassie!

    If you are IgA deficient, then any Iga celiac tests could be invalid.  It would be helpful if you could post your celiac blood test panel results and include the lab ranges as well.  I ask because not all doctors will order the complete panel.  The most common and preferred celiac tests are the TTG IgA and the TTG IgG .  These tests are pretty accurate but do not catch all celiacs.  I happen to always test negative on the TTG tests and I am 1) not IgA deficient, 2)  nor am I a two year old!  Yet I had moderate to severe intestinal damage per my biopsies obtained through an endoscopy.    

    I am also a little worried that your doctor may not be celiac savvy.  Doctors are not supposed to recommend a gluten free diet until they are sure they have ruled out celiac disease.  Sounds like your doctor told you to go gluten free even before your blood test came back.  

    You could have Non-Celiac Gluten Intolerance, but that is only after ruling out celiac disease.  There is no test for a sensitivity unfortunately at this time.   

    I hope you find this helpful!  

  6. 1 hour ago, bookbeast said:

    Hi. I was just diagnosed with Celiac's after the doctor did an endoscopy. Now to confirm my diagnosis, I have to do a colonoscopy to get a biopsy of the small intestine to confirm Celiac's, so what I would suggest is forget the endoscopy because they can't get to you small intestine from there. Do a colonoscopy. I recommend it. I'm doing mine soon to confirm, and from what I read online, that's how one can know for sure is through a biopsy. Blood tests aren't fool proof. Good luck. 

    No, the endoscopy (obtaining four to six  tissue samples) is the gold standard per most medical research (University of Chicago's Celiac Website is one source).  Your doctor may want to check out yor colon (e.g. Rule out Chrohns) and it is possible to biopsy the lower end of the small Intestine.  

  7. I think then answer is yes.  I am no expert, but your doctors are following protocol per the GI Association.  Get a positive, next step biopsies.  I personally tested positive only to the DGP IGA but negative on the rest (same for follow-up testing, so it was not a fluke), yet I had a Marsh Stage IIIB.  I would get the biopsies.  Oh, did I mention that I had anemia and no tummy issues at the time of my diagnosis?  Believe me I was shocked!  I just went in for a GI consult for a colonoscopy because I joined the 50's club!  ?

  8. A colonoscopy is much worse in terms of prep.  I still can not drink lemon gaterade without shuddering!  ? I went in the morning.  I was talking to my doctor while I was being prepped  and all of a sudden I was in the recovery area!  It was that easy!  It is also good to have him check for other things like an ulcer or SIBO.  It might not just be celiac disease only.  Remember too that you are new to the diet and takes time to heal.  You might even consider a dietician's' help to figure out if you are accidentally ingesting gluten.  

    On my other post to you, I told you about my glutening in July.  In August, I was in my GI's office asking for a follow-up antibodies test.  I had anemia at the time I was diagnosed and no tummy issues to speak of.   This time I had lots of intestinal pain.  My GI suspected SIBO or a blocked bile duct, but it was just celiac disease.  I just needed another month or two to heal.  

    Enzymes (including lactose ones) helpd temporarily.  

    Take care and try not to worry!  


  9. 10 hours ago, Mamamcdrama said:

    Really? So you think that my 7 year history of not being "gluten'd" was due to luck? Not due to good choices? Such as choosing the right restaurants, choosing the right meals, and choosing to speak at length with the waiter/waitress or chef? I would hope it has a lot more to do with my choices, and not luck, but you could very well be right.

    As for not condemning the Beverly Hilton for their "mistake" (as you seem to feel it may have been), yet saying you wouldn't eat there again, is a bit contradictory in my opinion. I feel as though I personally have to condemn them for how I was handled and if there had been an apology and reassurances that it wouldnt happen again, or an explanation of why it DID happen and how they were going to resolve it, I probably would have accepted that and walked away - because like you said, people make mistakes. I understand that. We all make mistakes.  I have been served toast with my gluten free breakfast on a few occasions or a mistake was made in the kitchen, which I caught. Luckily I guess... Those places were not condemned in my mind, but at the same time, when it happened and they found out, they quickly rectified the situation, explained it, and APOLOGIZED. I don't expect perfection and even an evening of barfing blood and ending up in emergency could have just been chalked up to an awful situation, if there were reasons, explanations and reassurances it wouldn't happen again to others, plus an apology of course.  I am not confident that this establishment has corrected its food handling practices because I didn't receive any of those things I mentioned, and I felt the need to warn others. Whether those others choose to condemn the Beverly Hilton or roll the dice and see if they get lucky, is totally up to them...

    The employees may not have been able to apologise per their insurance and corporate policy.  Let 's face it, people sue for all kinds of reasons in the U.S.  

     I am sorry that you became ill.  I will certainly avoid this particular location.  I try to read reviews from celiacs before going to a restaurant.  If I am not satisfied, then I eat from my cooler that I haul to every hotel I stay in -- luxurious  or not!  

  10. 2 hours ago, allymo said:


    I currently live in Brookings, SD and have been searching for a doctor to test to see if I have a gluten sensitivity. (I am fairly certain that I do, but I would just like to confirm). Have you found a good doctor in the Sioux Falls area?

    I am not sure the original posters are still around, but any medical doctor can run the celiac panel:

    -Tissue Transglutaminase (tTG) IgA and (tTG) IgG
    -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
    -EMA IgA 
    -total serum IgA and IgG (control test)
    -AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
    -endoscopic biopsy - make sure at least 6 samples are taken
    VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
    (Source: NVSMOM -- ?)


    Welcome to the forum and let us know how it goes! 


  11. All the advice given has been excellent.  I think that three months is not enough time to see huge improvements considering that 1) you were very sick and underweight, 2) had other intestinal issues, 3) and the gluten-free diet has a very steep learning curve.  Chances are you have other intolerances too, like so many of us.  You can try to identify those with a food diary where you should be tracking calories as well. What are you eating on a daily basis?  Have you considered consulting with a celiac-knowledgeable dietician?  I agree that cross contamination may be an issue.  I also agree that taking enzymes can be helpful until you can make those on your own.   Probiotics can be useful.  Just make sure everything is gluten free.  Focus your research on eating the best gluten-free foods that will expedite healing.  

    You have already been gluten-free for three months.  Another three should not be difficult to do.  What am I saying?  Most of us on the forum are gluten-free and have to be for the rest of our lives!  It can be done!  Then ask  for another TTg test to see if your antibodies are down.  

    I think you are just discouraged.  Waiting to get well is hard.  I get that! 


  12. 4 hours ago, Toxic Glutension said:

    Hmm! Sometimes I think I say too much! lol.

    I have to wonder squirmingitch if the gluten-free products are better on your side of the water. Here I can't say I am impressed by what I have tried.

    Adding my two cents!  Nope, gluten-free products are not any better in the U.S. vs. EU/GB.  They are about the same -- most are junk!  But, I think it is more charming and palatable to eat a gluten-free cookie in the Cotswolds!  Just saying...:rolleyes:

  13. Time.  It takes time to heal from celiac disease.  For some it can take months or a couple of years!  Seriously!  Why?  The learning curve for going gluten free is steep.  Plus, everyone has different levels of damage.  Your best bet is to eat whole foods (well-cooked for easier digestion) that you prepare yourself.  Avoid eating out.  Avoid processed foods because they add things that might not agree with you because of your damaged gut.  Keep a food journal to help track traces of gluten or to identify a new intolerance.  

    Many celiac are lactose intolerant.  The enzymes to digest lactose (milk sugar) are released from the villi tips.  But what if your villi are flattened or non-existent?  Other enzymes used to digest food may be missing as well.  Once healed,  many celiacs can allow  lactose-containing foods back into their diet.  If you are genetically  predisposed to being lactose intolerant (huge chunk of world population) then you many never get it back. ?

    Casein is a milk  protein.  You can be intolerant to it as well or allergic to it.  

    To reintroduce lactose-containing foods, start with those with the least amount of lactose, like hard cheese.  There is plenty of information on the internet that explains this.  

    Hang in there!  ?


  14. 6 hours ago, mhalper2000 said:

    I have come to feeling that a product that says Gluten Free but is not Certified Gluten Free is as good (or bad) as a product that does not say Gluten Free at all.

    There are a number of products that I have tried that say Gluten Free, and usually the major brands, Hellman's Mayonnaise for example, says Gluten Free but I get symptoms. Hagen Dais ice cream, says Gluten Free, but I get symptoms.

    Probably a mix of ignorance and cross-contamination at play with these scenarios and probably the case with what you mentioned. 

    I would look to other ingredients.  Intolerances can develop at anytime.  We eat Hellman's (Best Foods on the Westcoast) all the time and have never been glutened.  I can not vouch for the ice cream.  

    When I first went gluten-free, I reacted to gluten-free bread. Did not bother my gluten-free hubby (14 years gluten-free) but it bothered me.  Turns out I was reacting to Xanthan Gum.  It was not a gluten issue.  ?

    Read up here (FDA gov site) about gluten-free labeling:



  15. Have you been keeping up with the General Mills Cherrios saga?  Oats are often rotated/ grown in barley fields.  Most celiacs will not react to oats but the chances of cross contamination are  due to the growing and harvesting methods.  General Mills suppliers mechanically sort the oats.  Read about it here:


    like I said,  some celiacs react to any kind of oats, even certified ones for various reasons:


    The Chex gluten-free granola may very well have the same issues as Cherrios since it is another General Mills product.  We do eat Chex corn or rice cereal and have been fine. But those are single ingredients and are processed in a different and dedicated facility.  

    We only buy gluten-free certfied oats because the final product is tested and the oats are not grown in the same fields with barley and wheat.  


  16. You will know more when you get the biopsy report.  But....I am one of the rare patients, like you, who tested negative on everything BUT the DGP IGA.  My biopsy revealed a Marsh Stage IIIB (moderate to severe damage).  Anemia was my main symtom -- no tummy issues.  In all my research, it appears that toddlers can test this way, but I am old!  My GI doctors could not offer an explanation.   Follow-up testing is the same as only my DGP IGA can be elevated when I am exposed to gluten.   So, it was not a fluke during initial testing. 

    Did you experience any symptoms during the challenge?  If not, I would be worried about cheating in the future.  After my dx, (anemia is what my doctor caught when I went for a routine colonoscopy and ended up doing the Endo too) , my vertabrae fractured doing nothing!  Yep, I had osteoporosis and I did not have a clue.  That Dx was actually more devastating than the celiac disease.  No more skiing or  skating for me.  I did get back on my bike after taking a year off.   It is risky but it is worth it!