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cyclinglady last won the day on May 17

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About cyclinglady

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    DGP IgA positive only, Marsh Stage IIIB
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  1. I always had a normal ultrasound on my gallbladder.  That test primarily looks for stones.  A HIDA scan checks the functionality of the gallbladder which is a reservoir for bile (bile is created by the liver).    Bile is squeezed out when you eat something like french fries!  If your gallbladder works on and off or does not squeeze enough bile out to digest your french fries or bacon, then you are going to feel sick!  Mine reached a point where it had 0% functionality and then started to rot (infected).  I had emergency surgery while I was on a business trip.  But I suffered for over 25 years with it!  As did the rest of my family -- it is a family curse!  


    Your doctor did see some bile in your stomach.  Your gallbladder could be squeezing too much releasing way more bile than you need to digest whatever you have eaten.  A good sign is that you feel okay in the morning, but after eating, you start feeling pain the rest of the day.  Worse, if a heavy/fat-filled meal is consumed.  My Dad lived for 30 days on Pepsi and Chicken broth due to the pain just before his surgery.  They thought he had cancer due to his rapid weight loss, but it was his gallbladder.  Yep, he's one of seven siblings and six had non-functioning gallbladders.  


    I am not discounting a celiac diagnosis.  That is still on the table!  

  2. The tTg tests (often given for initial screening) are very accurate for MOST!  Like your friend, my ttg was negative and only one DGP was positive!  You could ask for the complete panel, or wait for the results of the other tests you took (e.g. parasites, bacterial overgrowth, etc).  Lactose intolerance is very real and a majority of people have it.  So, get off all dairy products for now!  How is your gallbladder? You might need a HIDA scan.  I had a non-functioning gallbladder, but no stones!  


    Here's the list of all celiac tests:


    • tTG IgA and tTG IgG
    • DGP IgA and DGP IgG (deaminated gliadin peptides)
    • EMA IgA (endomysila antibodies) 
    • AGA IgA and AGA IgG ( antigliadin antibodies) - older and less reliable tests that have been replaced by the DHP tests
    • endoscopic biopsy - 6 or more samples taken

    Source:  NVSMom, Forum Member



    I know you are overwhelmed and I am so sorry!  Please do not give up!  There is a reason your gut is bothering you!  

  3. Hi there. How much gluten must a person consume per day for the gluten challenge? I am hoping to get my test done in about a month, but have been gluten-light for several months. I'll be paying out-of-pocket, so I want to make sure I properly prepare my body for the test. Thank you so much for any info you can offer :-) 


    BTW, I also have been "diagnosed" with Fibromyalgia, IBS, Anxiety, etc. for many years. Seems many potential Celiacs aren't offered the proper tests. I wish I'd known to ask for a test sooner!


    Here is a link to the University of Chicago's celiac website. I recommend reading all their posted information to bring you up to speed and to insure your doctor knows what he/she is doing!


  4. I agree, it is the money.....but there is some truth to it.

    Let's face it. Just eating gluten free can help you heal from celiac disease, but as a whole our typical Western diet has a lot to be desired. We are eating way too much food, too much sugar, too much junk.

    Living with a gluten-free eater for 12 years prior to my diagnosis, made my learning curve shorter. Looking back, I was undiagnosed for well over a decade. I think I survived because I was able to indentify other intolerances, had my gallbladder removed, exercised, and ate gluten light (at least for dinner ). Stomach issues really resolved (used to have an IBS diagnosis prior to the GB surgery) and the anemia came and went. My body kept adapting and symptoms changed.. I improved over the first year on the gluten-free diet and avoiding foods such as eggs, milk, nuts, and garlic as I had been for years. Then I discovered new intolerances like those found in gluten-free recipes -- gums. So, I cut those out.

    After a year I got my diabetes diagnosis. So, I researched and decided that a low carb high fat diet worked well for keeping my blood sugar stable and in safe ranges. I have been on this diet (plus, gluten-free) for a year and a half. Boy, this really helped my healing and I feel great. No grains, except for occasional treats, and whole foods that I make.

    I am back to training for century rides (100 miles), my brain is back, thyroid stable (fingers crossed) and I am hoping for a good bone scan result in July!

    Am I 100%? Well, I am 53 and am aging like everyone else! I will never be 30 years old again!

    All the "studies" mentioned in the link? The bottom line is that no one knows! Not enough research has been done and that is from the leading experts. One OP posted minutes from an FDA conference this week. The manuscript is 268 pages long or so. The goal was to determine what kind of drug could be developed that would not cure celiac disease but perhaps lessen the emotional issues (e.g. Going out to eat and preventing cross contamination). What was agreed on by all the participants is that they do not have enough research! A few studies just does not cut it! Think about the daily news. We are bombarded with things like coffee is good for you and the next study shows that it is bad.

    It is hard to sift through everything on the Internet. What is valid and what is not.

    So, just go forward, adhere to the diet and identify other intolerances that may be bothering you. Eat healthy and cut out the junk!

    I wish you well.

  5. Well, they are negative and you mentioned that you had been pretty much gluten free for six months (give or take accidental glutenings), so that can impact your results. Perhaps, discuss with your doctor about a 8 to 12 week gluten challenge and get retested. You can always go gluten free like you had been doing to see of your symptoms resolve.

    I wish you well!

  6. Here is the complete panel:

    -tTG IgA and tTG IgG

    -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 replaced by the DGP

    -endoscopic biopsy - make sure at least 6 samples are taken

    (Source: NVSMOM -- )

    Often due to insurance reasons (saving money), doctors order a celiac screening which normally just includes the ttg and checking for an Iga deficiency. That is okay for most, but in my case I only had one positive --the DGP iga. Good thing my doctor ordered the entire panel! I ended up with moderate to severe intestinal damage.

    So, check your lab copies!

  7. You have a few positives (but I never had genetic tests and therefore have not really studied up in them), but a positive just means you are in the same club as about 30% of the population that has a 1% chance of developing celiac disease. These tests usually help rule out celiac disease. A celiac blood panel testing for antibodies is used to diagnosed celiac disease along with an intestinal biopsy (usually).

    Did you get antibody blood testing?

  8. Oh, one more thing.  When my oldest was in Kinder I wanted the perfect amount of protein, fruit, veggies, etc.  Now I just pack stuff without caring as much.  If elementary kids don't love what's in the lunch box it all comes home with them.  I'd rather she get some calories more than being hungry.  This might be the end of the school year talking, though...

    Ha! . I can not wait to stop packing lunches........I am so ready for summer!

  9. My husband went gluten-free per the poor advice from my allergist and his GP. He was never tested for celiac disease. Turns out that after being gluten-free For 14 years he feels great! He refuses to do a challenge and I do not blame him. Gluten makes him sick! I was formally diagnosed two years ago. Hubby would be the first to say that I get a lot more support from medical, family and friends. It makes it easier for my kid to be tested as needed. Will it help in in the future? I do not know.

    If your doctor could give you the dx by diet, family history and Gene testing, that would be great. If not, then you can be like my hubby and go gluten-free!

  10. Thanks BJJ....I will certainly keep that in mind. Since I wrote that post I've had two more asthma or bronchitis episodes after a tough workout. My dr. said it's exercise induced and will now use an inhaler before exercise. I don't have the other symptoms of COPD (cough, etc) but I will pay close attention. Thanks for the reply and I wish you the best.



    I will chime in and offer my opinion.....

    I love to exercise. You can tell by my name that I love bike riding. I swim, hike, and run too! Plus, I teach exercise and swim classes. But, I really slowed down after my diagnosis. A couple of vertebrae fractures (doing nothing) and severe anemia brought me to my knees. I was forced to do gentle exercises while my fractures healed. At the same time, I was helping my gut to heal as well. Now, I am back to normal (or pretty darn close!)

    I encourage you to slow down and allow for full healing. That is just my opinion, but it worked for me.

  11. You have to be consuming gluten daily (1 to 2 slices of bread or equivalent) for 8 to 12 weeks for a celiac blood panel to be accurate. Any test you do now will most likely be negative. You could consider introducing gluten back into your diet if you want to pursue testing.

    Perhaps look to your diet for gluten or cross contamination. I am assuming your doctor checked your ferrtin (iron stores) when he checked you vitamin D levels? You do not want to supplement iron if it is not necessary, in fact, it can be harmful.

    Welcome to the forum.

  12. Sorry, but weren't you having issues with your Dad bringing in bread and not being careful? I recall that you have been eating meals in their home when you were visiting. I think your Dad has dementia? How is that going? Have you stopped eating at your parent's house? I recall that you were in a tough spot. I am sorry that you are still getting glutened.

    I asked about retesting for compliance. I think TTG needs to be in range, but not necessarily a zero.

  13. I would personally feel better with a certified gluten-free labels, but let's face it, any supplement can be dangerous for a variety of reasons. Consumer Reports tested many and researched adverse effects related to supplements (which are non-regulate by the FDA. They recommend using foods sources over supplements. Here is the 2012 investigative report:


    What is a celiac to do when they are often vitamin and mineral deficient at the time of their diagnosis? Eat whole foods! Avoid processed junk! Even though I bake with gluten free flours that are certified, we use them sparingly. Why? Because cookies, cakes and bread are not good food choices! Love to eat them, but they should be just a treat!

    We have had many members who have healed, had repeat Endoscopies proving healed villi, and are thriving. Those folks are careful to read labels from trusted manufacturers and often buy gluten-free certified products. We had recently had a member who thought (along with his doctor) that he had Refractory Celiac Disease after being gluten-free for years. Turns out that he was getting exposures to gluten. This from a very intelligent person! We must all be diligent about checking labels and remaining on guard!

  14. Here are the tests and you would want to see a Ped GI and one who knows about celiac disease. I would also bump up your current Ped appointment. He/She might have a good referral to a celiac savvy Ped GI.

    -tTG IgA and tTG IgG

    -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

    (Source: NVSMOM -- )

    I would visit the University of Chicago's celiac website for more testing information, etc.

    Talk to your Ped GI (when you select him). He might recommend staying gluten free until he catches up on weight etc. Then maybe do a gluten challenge prior to school. Whatever decision you make, it will be best for your baby and your family!

    Let us know how it goes!

  15. It should have no gluten, but the glutamate is MSG. It bothers some people with and without celiac disease. I am Wary of using a product that is not nationally recognized and is in powdered form to boot. I would not buy it. Let's see if anyone else has.

    Oh, one of the reviewers does not recommend it for those with celiac disease. There is wheat processed in the facilty. Not sure how well they clean the lines or if shared. I would contact the manufacturer.

  16. Sorry, I can not diagnose the rash. I do not have DH (celiac rash). You could get tested for celiac disease. Also, check our our DH section. Here are the tests:

    -tTG IgA and tTG IgG

    -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

    -skin biopsy taken adjacent to the eruption (if you have a rash)

    (Source: NVSMOM -- )

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