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Ollie's Mom

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Ollie's Mom last won the day on October 7 2011

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  1. You got a lot of good advice, so I won't repeat any of it.

    One question, though. Do you have a lot of fat in your diet? I'm like you, and stay think pretty much no matter what. I'm also dairy free. When I'm breastfeeding, especially those first few months, I crave fatty things and I figured it was to supply fat to my milk. I would literally eat spoonfuls of coconut oil each day. And I'd use a LOT of olive oilin my cooking.

    Getting your supply up (if your body will let you) will require almost around the clock nursing. (iI've kept track, and my all time record was 9.5 hours with a baby latched on to me in a 24 hour period... Intense stuff... But they seem to be worth it ;) )

  2. My cousin's son was diagnosed at 9 months. He was in rough shape at the time...

    Fast forward 4 years, and the doc tells his parents that he's all healed, and can get off this ridiculously restrictive gluten-free diet since he has now healed and, thus, grown out of it.

    Argh... So he's eating gluten again!!

    His mom should know better. Her grandfather had celiac... His entire life (of course!)

  3. I don't get the "it is to specialized" line, on the total IgA testing. Makes.no.sense. at.all.

    Agreed. There is no logic to that. Ttg IgA and aga IgA tests aren't specialized, but total IgA is? That's a BS line if I've ever heard one. Just how is one supposed to get referred to a GI if they have negative IgA results because they're IgA deficient but no one knows it?

    I'd push for the total IgA test.

  4. I think you should ask yourself this, and answer honestly: if you did not have a celiac diagnosis, would you go to the rehearsal dinner? (another approach to this question is: if the restaurant they chose was gluten-free friendly, would you go to the rehearsal dinner?)

    If the answer is yes, then you should go. Bring your own food, or eat before.

    The wedding is not about you, it's about you brother and his wife to be. Trust me, we've all been there. 4 years into this, I would love to be invited out even to simple things like lunches with coworkers. But they think it's rude to invite me to a restaurant I can't eat at; I think it's rude that they don't invite me at all. It's not an easy thing to deal with when social functions tend to revolve around food, but you don't need to eat to be social.

  5. I used to have what I called my days from hell where I'd have a terrible migraine, and I'd vomit almost continually all day long. It was not food poisoning, but it was always coupled with a migraine and a weird kind if diarrhea. The first few times I had that reaction, it was after I had had a beer or two the night before. Then it started happening more frequently, and seemingly rabdomly (although I now know the culprit was gluten).

    I've also had food poisoning in my time, and the town are totally different feeling, although on the surface the symptoms sound similar (headache, vomiting, diarrhea). With food poisoning, I just prayed for it to be over quickly. With the gluten induced days from hell, I remember thinking to myself a few times that dying probably wouldn't be so bad, I actually felt that bad.

  6. I thought there was a study done where they screened blood samples from army recruits from the 1950's (preserved samples) and recruits from modern times. There was a statistically significant difference in the percentage of positive antibody results, something like the percentage of positive results today being twice that from 50 years ago. This implies that the rate of celiac disease has in fact increased.

    (sorry, I'm on my phone and cannot easily search for or post a link to the abstract for this study).

    As for being more afraid of environmental pollution than GMOs, those are two separate issues, both worthy of concern imo. Once you start messing with the natural balance of things, you are opening the door to unforeseen consequences. I always think about the decision to take feedlot herbivores, such as cow's, and forcing them to eat meat and other animal products. Food is food, right? Oops.... Mad cow disease. How could we have seen that coming? Feeding them grains (corn, not a normal part of their diet) is no problem, right? Oops... Man killing strains of e coli. How could we have seen that coming? Genetically modifying plants a la Monsanto method to make them stringer / higher yielding / "round up ready" / etc is no problem, right?

    You get where I'm going with this.

    Just my 2¢

  7. Personally, I think most of the world's population has issues with dairy products (ie - breastmilk of cows that is not designed to be eaten by anything other than calves). I have read that mammals of all species tend to stop making lactase (or, at least, adequate amounts of it to digest milk) during childhood as adult mammals do not require breastmilk beyond infancy / early childhood.

    My eldest is dairy free, and made great improvements once it was removed from his diet. Now, my whole house is dairy free, and my youngest (now 8 months) will never drink cow's milk.

    Almond milk is a real hit around here. I also love coconut milk.

    And don't worry about calcium - green leafy veggies, soy, almond milk, etc etc are all great sources of calcium. And they're easier to absorb than the calcium in cow's milk (which is designed to be absorbed by baby cows, not humans).

    Ok, anti-dairy rant over. ;-)

  8. Thanks guys! All of these links were extremely helpful. I want to slam this on my old doctor's desk and maybe he'll realize how little he knows about celiac testing, but obviously I never want to see him again!

    Thanks again guys, I'm definitely going to show my PCP all of my tests results and hopefully he'll realize that three positive blood tests and early signs of celiac on a biopsy AND response to a gluten free diet warrant diagnosis.


    If you have your doctor's email address, just send him the link to this thread. ;-)

    Good luck on your quest for a formal diagnosis. And sadly, yes, many of us have had doctors that bad (and, in some cases, worse).

  9. There was an episode of a show called "mystery diagnosis" where a little boy had weider "seizures". No one knew what caused it. Til finally he was diagnosed celiac (the neuro stuff was partly due to malabsorption).

    I'm on my phone, so I can't post a link. But I'm pretty sure I found it on YouTube by searching for "mystery diagnosis celiac". The show even had a clip of a home video of the child having one of these episodes. You might want to check it out

  10. I've been gluten-free for 4 years. And just the last few months, I glutened myself with soy sauce. Three times. Yep, three freakin' times, from the same bottle. I knew I had been glutened, but couldn't figure out what it was because everything in my house is gluten-free (or, so I thought). I was blaming it on the fish food (even though I carefully wash Mt hands after feeding my fish). It took my mom pointing out the wheat listed on the sot sauce label when she was at my place. It happens! Not that it doesn't suck when it does.

  11. I'm with all the PPs.

    Get your daughter back on the gluten-free diet that you know she needs, and find a new doc ASAP. Just because this one says she doesn't have celiac doesn't mean it's true, and it doesn't negate her previous diagnosis.

    What brought you to see this new doc? New /different symptoms? Or you just wanted your celiac child to be in the care of a GI?

  12. If I were you, I'd get the blood tests done for celiac disease. Others here can list the full celiac panel for you to take to your doctor. This would require you to be on a full-gluten filled diet in the weeks / months leading up to testing. Since your reactions from eating gluten are silent (for now?) you could do this with little discomfort (unlike many of us here). Then at least you'd have some celiac test results. While not 100% accurate (false negatives are not uncommon) you may test positive.

  13. Torani flavored syrups are one example of a gluten-containing ingredient being part of "natural flavors" and not being otherwise declared. The FAQ page on their website lists the following flavors as containing gluten:

    Bacon, Classic Caramel, Sugar Free Classic Caramel, Toasted Marshmallow and Sugar Free French Vanilla.

    Here are the ingredients for the Classic Caramel: Pure cane sugar, water, natural flavors, citric acid, sodium benzoate, potassium sorbate (to preserve freshness). I have one of the SF Classic Caramel and it does not say that it contains wheat or gluten anywhere on the package. But it does, according to their website.

    I just wanted to repost this. It looks as though this is an example like Peter was looking for. It isn't "hidden" in that they clearly state on their website that these flavors contain gluten, but you'd NEVER know if you only looked at the label. So, on the label, it is hidden. It may be rare, but it does happen.

  14. I should also add that it won't cause intestinal damage unless it is eaten, but if you use it it ends up all over your hands. I wouldn't put glutinous soy sauce or gravy all over my hands, so I stick to the same rules with cosmetics etc.

    If you're pursuing testing, it won't matter, but if you're trying to be strictly gluten-free in the future, I'd ditch it.

  15. Since you just cut back on your meds, I'd give your body a week or two to find a new equilibrium. It could just be headaches are a withdrawal symptom of those meds. Or you may have accidentally been cross contaminated (easy to do, especially when first starting the diet). I know headaches can be a drag (I had a headache or migraine constantly for years), but try to give it a bit more time before looking for another cause. It took me about 3 months to be totally headache free after ditching gluten, and like you, I had major improvements right away and felt discouraged when I'd get another headache.

  16. I was really careful when I was pregnant (both times)... Made all my food myself. Aaaaand... My baby brain made me buy the wrong kind of soy sauce at the grocery store. I gluten ed myself several times from the same bottle, and thought I felt like crap because of the pregnancy. Hubby asked one day why we had soy sauce with wheat in it... I couldn't believe it!!

    Anyway, my baby boy is 7 months old now and perfectly healthy. Try not to worry. I'm sure your baby is fine. A mother's body will go to great lengths to protect a growing baby.

  17. I never said that the breads and cereals were naturally nutritious ...... That is why they arue fortified! Most gluten-free replacements are not so her point was that with out proper supervision and education people who eliminate the gluten and simply replace them with gluten-free food replacements run the risk of not getting what they need. Dr Fasano was in agreement. It wasn't a judgment on how anyone is feeding thier children.

    It was the statement that feeding a child a gluten-free diet and making sure they aren't deficient in vitamins and minerals is a tough balancing act that should only be done under professional supervision that got me. My doctor doesn't know the first thing about diet and nutrition, and the few dieticians I've met weren't much better.

    Anyone following even a gluten filled diet can suffer from nutritional deficiencies since they fill up on high calorie, "fortified" foods at the expense of high volume, nutritionally dense, but low calorie foods. But grains can't be fortified with every micronutrient the human body requires.

    And don't lurk because of these replies! I felt a need to put together a rebuttal because I don't want other parents who are considering trying a gluten-free diet for their little ones thinking that they may end up harming them.