Cara in Boston

A positive is a positive. My son was only positive on the IgG tests and negative on all IgA tests (even though he was not deficient). I was the opposite. He has extensive intestinal damage. I had no damage at all. He had zero GI symptoms, I had mostly GI symptoms. We both have Celiac and our symptoms went away when we went gluten free. It is different for everyone, which is why they give you a variety of tests. Even if your biopsy appears fine, that only means damage was not found (missed or not visible yet). It does not mean you don't have C.D. After all testing is done, try the diet. Resolution of symptoms after going gluten free is, in itself, the final test. I would find a better informed doctor also. cara

You could also have NCGI (non Celiac gluten intolerance). Same symptoms, negative blood tests. Why not try eating gluten free and see if you improve. Give it time (6-8 weeks) and don't cheat. If you improve, you'll have your answer. Given the negative blood tests, it is not likely they will test you further, so changing your diet is fine.

I was not diagnosed (nor did I have any symptoms) until my second pregnancy. At about 4 months, I developed GI symptoms, insomnia, etc. I just attributed it to being pregnant. The symptoms continued and new ones developed. Over 5 years, I saw doctors for various problems (neurologist for dizzy spells and numbness; cardiologist for heart palpitations, etc.). I developed anxiety, but I thought it was because I felt very ill and the doctors couldn't find anything wrong. I was on medication 2x a day for acid reflux. My hair was falling out. It wasn't until my son was diagnosed that I was even tested . Once I went gluten free, all my symptoms faded away and I returned to normal. I have two boys. The older one is fine. Younger one has Celiac. I often wonder if my pregnancy with him triggered it for me. Since he was diagnosed much younger (age 5) I often wonder if somehow me developing it while carrying him is what triggered it for him. This doesn't answer your question, but I thought it was interesting in light of the research that was shared. I appreciated reading the article. cara

Did the doctor diagnose you with anything? It sounds like diverticulitis. Usually treated with 10 days of antibiotics. Infection can improve, but if it isn't 100% cleared, it can flare up again. I just had a flare up that didn't improve after 10 days on meds. Ended up in the hospital for 5 days of IV antibiotics. This condition is not related to Celiac. Let your doctor know you are still feeling pain. In the meantime, take it easy (eat low fiber) for a couple of weeks and see if that helps. Call doctor if you develop sharp pain, fever, or blood in your stool.

We've tried them several times and each time, we get sick. It's a shame because we really liked having this easy option. Didn't Canada just rule that Cheerios CAN NO LONGER be labeled gluten-free there? We also stay away from other products that rely on some "system" to remove gluten (like some gluten-free beers). Just stick with things that have naturally gluten-free ingredients. I was recently in the hospital for several days and was surprised to see Cheerios on the gluten-free menu. Good luck to you and your family- cara

We love Vernors and bring it home when we visit Michigan. I hoard it in the basement for any stomach issues that pop up. My son and I (both Celiac) have never had a problem with it. Instead of gatoraide, consider coconut water to replenish fluids and electrolytes. Does a better job and no chemicals or dyes. Not coconut milk . Coconut water. They sell it plain and flavored.

I just had one done last week. I called the CT place in advance and the first person I spoke to didn't know the answer. She told me not to worry though, because I could have juice instead if needed. (This made no sense to me, but whatever). On the morning of my appointment, I called first and again, someone told me she didn't know the ingredients, but she was sure they had something gluten free. When I got there they had already flagged my file and they brought me the banana flavored contrast drink. It was gluten free. The other options were not. They took it very seriously. Still wondering about the "juice" option though. The banana was pretty gross.

The biopsy can only confirm Celiac, it can't rule it out. A negative biopsy does not mean she does not have Celiac . . . it only means damage was not found. Maybe there is no measurable damage (yet). Maybe it was missed. It does not mean no Celiac. Your daughter has a positive blood test and Celiac symptoms. The next "test" is to see if her symptoms resolve with the gluten free diet. Do not let an uninformed doctor jeopardize her future. There are also implications for the rest of your family. All first degree relatives need to be tested, even if they are asymptomatic. Since she has already had an endoscopy, you can start the diet right away. Be strict, and be careful of cross-contamination. You may find that other "symptoms" that you never noticed (sleep habits, energy level, concentration, etc) also improve. Best of luck to you. Cara

We just went to Legal for lunch today (near Aquarium) and I had a great conversation with the staff. I learned that ALL their fried foods are gluten-free because the recipe (chickpea flour) was so good, they were able to replace it for all the battered food so that they could eliminate the wait for the dedicated gluten-free fryer. They have so many requests for gluten-free food, it just made sense to make it all gluten-free. We got three different meals today and we were able to taste/share everything with the "regular" eaters in our family. They also serve delicious gluten-free rolls when you order a gluten-free meal. Can't say enough good things about them. Great service too. Not inexpensive.

We live in Boston. There are no 100% gluten free places, but there are a couple of places we feel very safe - my son is very sensitive and needs precautions taken to prevent cross contamination. When at MGH, we usually walk up the street to Whole Foods for a treat. Lunch or dinner at Legal Seafood (you can even get gluten-free fried calimari!). For a REAL treat, go to Kane's Donuts for a gluten-free donut. A real, fried donut. Worth the walk. Go early because they sell out. 5 Napkin Burger (in the Pru) has gluten-free wings and a dedicated fryer for French Fries. We used to get takeout from PF Changs in the Pru but I think it may have closed. Best of luck to you. Enjoy your stay!

Looking for recommendations for places to eat with 2 in our group diagnosed with Celiac. My son is very sensitive, so we are looking for places that not only have gluten free menus, but are also trained to avoid cross contamination and other problems. There seems to be lots of places that say they can accommodate the gluten free diet, but we've had problems before. "Gluten Free" doesn't always mean "free from gluten." Thanks - Cara

Things like this happen more often than you would think. I have this included in my son's 504 plan at school: "Staff will be aware of food “bullying” and notify administration and parents if it occurs or is reported. Reported incidents will be handled in accordance with the BPS Anti-bullying policies." I would have zero patience for any kind of intentional action that would make my child sick. He would miss school, baseball, etc. for at least a week or so. Do not tolerate it. Just because there isn't an immediate response, it is no less serious. Imagine if those jerks did something like that to a kid who had an anaphylactic reaction to an allergen?

A negative biopsy does not mean you DON'T have Celiac. It only means damage was not found. This could happen for several reasons, the most common is they just happened to biopsy a spot that did not have damage. It is often missed. You also might not have enough damage to show up yet. Some doctors wait until you do to give a diagnosis. This is crazy. If you were pre-diabetic, would the doctor tell you to just continue on until you develop diabetes? No, you would change your diet and change your life. Sounds like you've had a positive blood test and a positive response to the gluten free diet. That should be enough to diagnose you. After my son was diagnosed (positive blood and biopsy) I was tested. I had a positive blood test. I had been in and out of my doctor's office for years with a variety of symptoms (insomnia, heart palpitations, dizzy spells, headaches, etc.) and had GI issues that I just thought were part of getting old. Once I saw my blood test results, I went gluten-free too and all symptoms vanished. It was like I was a new person. My biopsy was negative, so my first doctor simply said I didn't have celiac disease. When I asked about everything else (son diagnosed, symptoms, blood, etc.) he said they must just be a coincidence. Started to go to the specialist treating my son and she said that was ridiculous. Of course I have it too. The biopsy can only confirm the diagnosis . . . it cannot rule it out. That so many doctors still use it as the "gold standard" is very frustrating. If you need a diagnosis, I would find another doctor who is more up to date on current testing standards. There is also something called "non Celiac Gluten Sensitivity" where you have all the symptoms, but test negatively. My current doctor considers "response to gluten-free diet" as a huge indicator . . . more reliable than the biopsy for whether or not a person is sensitive to gluten.

Please have her tested for Celiac now that she is currently back on Gluten. At age 5 my son's behavior went from "normal" (he was a handful, no doubt, but nothing unusual) to super-sensitive-tantrums-at-any-time . . . he was irrational, no amount of redirection or even threats of punishment seemed to matter. The tantrums were over things like not being able to get his socks on fast enough, or the lego pieces wouldn't fit together. It culminated in a HUGE public tantrum in McDonalds when he didn't get the toy he wanted in his happy meal. We have other children, so we were "experienced" parents. I couldn't figure out how we had one kid that just couldn't keep it together. He did manage to keep it together at school, which further confused us. After about a month of this, he was suddenly complaining of stomach aches daily. By the time we got him to the doctor, the stomach aches were gone, but the behavior was still there. We had basically stopped taking him anywhere because his behavior was so unpredictable. The whole family sort of tiptoed around this kid so as not to set him off. At his doctor's appointment, I happened to mention how "challenging" he was (just in conversation . . . no idea that it was a symptom of anything) and she put the pieces together and tested him for Celiac. The results was "very positive" and as soon as he was able to go gluten free, we saw a huge improvement in just days. Turns out, this type of behavior is the #1 symptom of Celiac in children. He had absolutely no other symptoms (other than the stomach ache for about 4 days in a row.) Very regular bathroom habits, no growth issues, etc. Just this crazy behavior change. Its been over 5 years now and I am so thankful we figured it out. It is important to get the tests so you have a firm diagnosis. When he was diagnosed, we had everyone in the family tested and I was positive too. I thought all my issues (headaches, insomnia, brain fog, etc.) were due to just getting old. All went away when I went gluten gluten free too.

Read up on the Paleo diet. I lost weight while consuming slightly more calories. Once I eliminated grains and added more fat, that seemed to do the trick. Plus, I found that I felt GREAT. Not starving all the time. I made sure I had protein and fat at every meal (avocado, nuts, olive oil, etc.) and everything improved (medical numbers, skin, hair, energy, mood, etc.)