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About cyclinglady

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    Advanced Community Member

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    CD diagnosis: 3/2013 via antibody testing and biopsies
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
  • Location
    Orange County, CA

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  1. Did they run a DGP IGA? While your DGP can take over a year to come down, I still think you should be getting tested every six months until you see a downward trend. I am not making that up. Google it. My DGP was off the charts when I was glutened last summer. My symtoms were severe, yet at diagnosis, I just had anemia. It took six months for all symptoms to completely resolve (rashes and hives took the longest and three month to regain dairy). What I am saying is that symptoms for celiac disease can change.
  2. This is an older posting, so I am not sure the original OP will respond. Kaiser is great, but they are all about keeping the costs down. So, they do not allow their first-line doctors to order anything but the TTG tests for celiac screening. Only a GI (or perhaps a higher up specialist) can order an entire panel. If you tested negative on the TTG, and are still struggling with celiac-like symptoms, I recommend asking for a GI referral. Ask for the complete panel and document in writing (be nice). Why do I know this? I test negative always to the TTG. When family members went to Kaiser to get celiac testing, their PCP doctor could only order the TTG. So, do not give up on a celiac disease diagnosis without getting the complete panel.
  3. I am concerned that you are not getting any follow-up care regarding celiac disease or Non-celiac gluten Intolerance. You had elevated antibodies. I understand that your biopsy was negative, but at the very least you should get retested for diet compliance and to check for any deficiencies. I do! You can't really go by symptoms to determine if you have been glutened or not. I was just anemic when I was diagnosed. Only a blood test could tell me if I were anemic again unless I let it go a long time and I get out of breath, but that's scary severe. When I was glutened last summer, my symptoms were so severe. So different from when I was diagnosed. My GI thought I had SIBO, but my DGP tests revealed.....a glutening. I am also concerned that you think you are eating out twice a week at safe restaurants. What does that mean? Are those restaurants run by celiacs? Are they 100% gluten free? Even though they may have a gluten-free menu, you are still risking a gluten hit. People make mistakes. Cross contamination happens. Again, best to get re-tested. Those DGP numbers should be close to zero after a year and a half of being gluten free. Take care!
  4. I would add that you request a full celiac panel (EMA, TTG and DGP). Why? Because the typical screening TTG test is very good, but it does not catch all celiacs (like me). Here's the list of blood tests:
  5. You symptoms could be celiac related. It's hard to say, since there are over 200 symptoms attributed to celiac disease. All that you listed could be celiac disease....or some could be related to Hashi's. I had some pretty severe night sweats. You might want to get your thyroid and other horomones (e.g. estrogen, etc.) checked. These can flucuate like crazy during a thyroid flare-up or celiac flare-up. Who knows! My thyroid went crazy swinging from hypo to hyper in a matter of days. Drove my doctor nuts. It all settle when I went through menopause at the very same time I was diagnosed with celiac disease. My symptom was primarily anemia. No tummy issues. But I had lots of little things that I blamed on menopause, thyroid and aging. Most of those have gone away on a gluten free diet. Even my enlarged thyroid is normal size again and my nodules have disappeared! It's like my whole immune system has settled down --- as long as I avoid gluten! Then all bets are off! I did develop osteoporosis along the way. I fractured my vertebrae doing nothing two months after my celiac disease diagnosis. Like you, I'm 5" 2". Wait. Those fractures! I'm now just 5' 1". I'm little. My kid was really little too. She was always under 5% on the weight, but her height was 50%. I would think that both height and weight being low, could very well be a sign of celiac disease. I didn't worry because my kid was at least normal in height and her head was normal as an infant. Her Ped kept trying to fatten her up, but I refused. I fed her healthy things. By 1st grade, she was in the 25% range for weight. Now at 15, she's at 50% and an athlete (track and water polo). Constipation and diarrhea are common symptoms of celiac disease. Not everyone has to be wasting away either! cholesterol levels were always super low. My old GP used to pat me on the back. Little did I know that it was another sign of celiac disease. Those liver enzymes? Happens a lot with folks who have celiac disease. I would get your kids screened. Remember, celiac disease can develop even when you are 90 years old! So, I test my kid every few years even if she's symptom free. She's gluten light (our house is gluten-free), but I manage to give her prepackaged gluten food in her lunch. If she's lucky, her friends make her sandwiches! When I am getting ready to test her, I make sure she gets plenty of gluten. Funny thing is that she'll take a gluten-free homemade cake over store bought gluten-filled cake. She also likes her burgers "protein style" meaning they are lettuce wrapped. If your biopsy shows up negative, ask for a pill camera. Again, that's how my 19 year old niece (same age as your sister) was diagnosed. Something is wrong. Don't settle. Keep advocating for yourself and your kids! Enjoy your little ones.
  6. When I fractured two vertebrae doing NOTHING just two months after my celiac disease diagnosis, I was devastated. I could handle the celiac disease diagnosis. Heck, I had been making gluten free food for my hubby for 12 years and I knew the drill. My learning curve was NOT steep! But fractures? Of course, I didn't know that I had developed osteoporosis as a result of celiac disease (same with my anemia). As you can tell, I am active. I did not ride my bike for a year. I did not do anything for six months. First, I worried about future fractures and then I just could not catch my breath due to the anemia. So, I did some gentle walking. (I also milked it and got out of lots of chores...."I can't carry those groceries....") Folks on this forum encouraged me. They kept telling me to be patient. I had to get off my bike when I was pregnant and I got off after my gallbladder surgery. I knew I'd get back on my bike with time (at least I was hopeful). My osteoporosis is holding steady. I'm no longer losing bone mass. My ribs and hips no longer ache when I am sleeping and I'm back on my bike. I even went rollerskating (though that's was really risky!) Keep a food diary. I can tell you that I have developed intolerances. Some have resolved and some have not. I still can not eat onions or garlic. Was that in your stew? Are you spices gluten free? It's not always gluten that can get you! So, hang in there. Take one day at a time. Focus on positive things. You can do it!
  7. I am sorry that your hubby is sick! I am not a doctor, but I would agree that a gluten free diet is probably his best bet for improving his health. Waiting for an endoscopy to obtain biopsies does not seem necessary at the age of 68. is important that he maintains the diet for at least six months to determine if it is working. The gluten free diet is hard. I'm not going to sugar coat it. It is doable, but the learning curve is steep. Check out our Newbie 101 section for tips under the "Coping" section of this forum. Gluten can be hidden in unlikely places like soy sauce. Cross contamination is huge (hubby and I are both gluten free and so is our kid within our home. She eats gluten at school). We (the folks here on the this forum who walk the walk) recommend avoiding all processed foods in the beginning and that even includes gluten free items (which are just junk anyway). Do not eat out unless it's a 100% gluten free restaurant run by celiacs! Take risks once he feels better. Eat fish, meat, veggies, fruit, nuts, cheese, dairy. Though many celiacs have issues with lactose that often resolves depending on your genetic make-up. Make sure all medications and supplements are gluten free. I am extra careful and only purchase certified gluten-free supplements. Call all drug companies to confirm that medications are gluten free. Yep, drug companies do not have to follow the same rules as food companies. Sad, but true! I hope this helps! I was anemic (severely) too. I was able to feel better within three months of being gluten free. celiac disease is genetic. All first-degree relatives should be tested even if they are symptom free. I was diagnosed three years ago (took about two years to really feel well even after my anemia resolved. Lots of little things that I just thought were related to old age!), but my hubby went gluten free 15 years ago. It worked for him. That first year was tough. He'd be the first to say that I have had it easier with my formal diagnosis. He could do a gluten challenge, but there's no way he's going back on gluten . We know it makes him sick. So, he either has celiac disease or Non-celiac Gluten Intolerance/Sensitivity. Either way, he needs to be gluten free. I wish your hubby well!
  8. The first test is negative and it's pretty specific for celiac disease. The tTg test, hard to read. Your result is less than 2, but the range for being positive is 0 to 3? That's seems weird. So, I don't know. Did you type it correctly? The third test is just a control test insuring the first two IgA tests are valid. This is big. Your neurologist was wrong to tell you to go gluten free. Besides a blood test, the gold standard for diagnosing celiac disease is an endoscopy/biopsies and you need to be eating gluten daily in order to get accurate results! I recommend you go back on gluten until you see your GI. Will you see him/her soon?
  9. Welcome! I'm glad to hear that you are doing better on the gluten free diet. Perhaps, you have other issues, or maybe you just need to make sure you are not getting any hidden gluten into your diet. Do you eat out? Live with gluten eaters? Eat processed gluten free food? I understand the need for a formal diagnosis. Here is some information about a gluten challenge. Keep in mind, that you would have to eat gluten daily for 8 to 12 weeks. All celiac testing requires a person to be on a gluten diet (less for an endoscopy). It is very important that you be under a doctor's care during the challenge.
  10. Welcome. Did they include an IgA deficiency test? A positive on the celiac panel usually requires a referral to a GI for further evaluation (the rest of the celiac panel and/or endoscopy to obtain biopsies). There are over 200 symptoms of celiac disease, so a doctor shouldn't rule out celiac disease because you don't fit the classic celiac symptoms.
  11. It can take a year or longer for antibodies to go down. Doctors just look for a downward trend. And symptoms do not always correlate with antibody levels. Some folks have low levels and high intestinal damage and some folks have high antibodies and little intestinal damage. Celiac disease Varies with each individual. That is why you have to sift through the data/research and not take it verbatim as it may not apply to you! My antibodies were in the 80's in August. Down from the 200's last summer (bad glutening) and that was taken almost five weeks after my hidden/cross contamination gluten exposure. My last 80's result? My GI and I think I may have gotten glutened again this past summer (was out of the country/home for five weeks, so what are the odds?) or it could just be coming down from last year. But we have no way to tell for sure. i did not have horrible symptoms this summer. Who knows? Nothing he can do. I just have to focus on moving forward. I know you are feeling poorly still, but you have to be gluten-free for months or YEARS to feel well. Be patient. Hard to do, but that is the way it is.
  12. I would still recommend the endoscopy. A firm diagnosis can help : 1) maintain the gluten-free diet and 2) allow for your kids (and all first-degree relatives) to get tested easily. You still can develop other autoimmune issues -- you already have Hashi's like me, so Crohn's is always a possibility and they can check for that as it might have developed in a year. Your sister might even have celiac disease. Has she been tested for celiac disease? I am trying to get my newly diagnosed with Crohn's niece to go gluten-free. She has tested negative to celiac, but it could develop later. In the meantime a gluten-free diet may help her with Crohn's flare-ups. She, BTW, was diagnosed via pill camera. The gene test? Some 30% of the poulation carries the genes, yet only a very few go on to develop celiac disease. Get and keep all lab and test results. You should be 100% in charge of your health and your kid's health!
  13. All the tests for celiac (except gene testing which can only rule out celiac disease and not diagnose it) require a person to be in a gluten diet. The time is 8 to 12 weeks for the blood test and four weeks for the endoscopy. I would say a repeat is needed. Make sure they take up to six samples. Humm...were they looking for celiac disease during your first endoscopy? A GI should know and confirm that you were eating gluten daily before taking ordering the endoscopy. You might need a more celiac-savvy GI!
  14. I trust Jane Anerson's gluten-free advice. Afterall, she helped us find gluten-free brownies and chicken wraps at Costa's while we were in Great Britian and Spain! 😊 Seriously, she has DH (celiac rash). I do not. So I do not worry about gluten in my makeup except for sunscreen, hand lotion, and lipstick -- anything that I might accidentally eat (my foundation is just minerals). I buy certfied gluten-free Gabriel lipstick and I hear that folks love Red Apple.
  15. Welcome! I would recommend a biopsy. Yep, you have a positive on the antibodies panel and that warrants an endoscopy. Keep eating gluten until all testing is complete. 😊