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About squirmingitch

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    Gardening, birds, bees, butterflies and nature in general. Nature is a genius!
    "If there are no dogs in Heaven, then when I die I want to go where they went." ~~~ Will Rogers
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  1. Hey there! Welcome to the club you never wanted to be a part of. Boy, you are certainly throwing yourself one heck of a bang up pity party aren't you? PLEASE do not take that as a put down! I don't think there is a single solitary one of us who hasn't thrown ourselves at least 1 pity party. I know I've thrown at least 3. Oh, & crying meltdowns in the grocery store? Every one has been there, done that one too. It's all part of the process just like cyclinglady said. Ravenwoodglass is right on too about how it can mess with your head. Boy! Can it ever mess with your head! You really have been given excellent info. by all who have answered. I want to touch on something that hasn't been addressed yet but you mentioned it and that is kissing. You might call me an old lady as I'm just shy of 60 but I'm also a child of the 60's so remember that when you read what I'm going to tell you. BTW, I'm married to the same person, my only marriage, for 43 years. Anyone who cuts & runs because they have to brush their teeth before kissing you is not worth 2 minutes of your time and you are well rid of them! Be thankful that you have this "screening tool" because it will save you a lot of wasted time. If they won't even give you a chance when they hear about the precautions you have to take then they aren't worth a damn! Imagine someone like that standing by your side when times get tough. You can't can you? That's because they won't and you want a true partner who will support you and hang in there through the challenges we face in life & believe me, you will both face many life challenges. Cooking. You don't have to be a gourmet. Cook simple. You know how to boil & scramble & fry eggs right? Only takes a couple minutes. Veggies? Aw heck, nuke 'em OR throw them on a baking pan spritz them with olive oil & spices of your choice & stick them in the oven. Smoothies are easy. Fresh fruit is well, fresh fruit - easy - peel it & eat it or just pop it in your mouth. Sweet potatoes can be nuked too & are wonderful for you. Salads are easy. Nut butters are a great source of protein. Karen had some great examples in her post too. Her "attitude adjustment" tips are great as well.
  2. I know that Lea & Perrins Worcestershire Sauce in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free. I wouldn't use it. No sense taking any chance at all.
  3. I doubt you will find a GI doc or any other doc who will put any credence in the Enterolab results. See:
  4. There is no such thing as a "gluten sensitive" gene. DQ2 is one of the celiac genes. As others stated, the gene test is more to rule out celiac but does NOT mean the person has celiac or will later present with celiac. About 1/3 of the population has the celiac gene(s) but they will not all develop celiac. Having said that, it's not the norm but there are other genes associated with celiac - not common at all but it does happen.
  5. Well if you carry the gene & your hubs carries the gene then I would assume the odds are greater that the kids will present with celiac. I think we have skewed numbers for family members having celiac and they are skewed on the negative side. If family members are not routinely tested then there can be no (or not enough) statistics to reflect the true state of things. Even though protocol states family members should be tested, doctors just aren't aware of that -- just like your kids ped gave you a hard time about testing the rest of the kids. If the docs don't know to test them then how many celiacs are out there that don't know their family members should be tested? We see it here all the time. New celaics come to the site & have never been told by the doc that their family should be tested. They have no clue until we tell them. I am in favor of your kids getting the endoscopy and here's why. They need a bonafied dx so school and college take them seriously and the kids will be protected. People have argued on here that their school district doesn't require a dx and others find they have to fight like a tigress to get their kids protected in their school district. So let's say you live where the school will take your word for it and do a great job of making sure your kids are protected. Great! Now, will you always live there? We never know where life is going to take us. You may move within the county, or within the state or you may move across country and do so several times before your 3 yr. old graduates. Even if you stayed in your present school district, what guarantee do we have that the policies of the district will not change over time? An endoscopy is not really a big deal. Read in the Parents of Kids or Babies section Read this entire thread: Here's another: Here's another: And this:
  6. We can't tell without the reference ranges on those bloods. Different labs have different ranges so it's important to have those ranges. Celiac can present at any time in life so if you had tests 4 years ago that does not mean you're not celiac forever. It might be smart to get tested again BUT make sure you're eating gluten (at least a slice of bread or 2 saltines every day) for 12 weeks otherwise you'll get false negatives.
  7. You're welcome. That's a great site BTW although I find it a bit crazy to navigate at times.
  8. Oh you're so welcome! 2 saltines per day should be enough. See: Many people find it easier (if there really is an "easy") to eat the gluten before bed. The idea there is that the "worst" of the symptoms happen while you're sleeping so when you get up in the morning it's not as bad throughout the day.
  9. Good question RMJ. oxlfm2016, You should be tested for celiac disease. Make sure you continue to eat gluten until ALL testing is finished! This is imperative! In the meantime, try eating only well cooked veggies, and meats. Even fruits should be well cooked. Easier to digest and much kinder on your tummy. Also take probiotics. Generally lactose intolerant people can eat yogurt without issue but there are non dairy probiotic capsules such as one that Culturelle makes. Bone broth is great for helping to heal the gut, is super easy on the digestion and extremely nourishing but I'm not talking about something from a can. I'm talking about making it from scratch. Stay away from spices like garlic, red peppers, chili peppers & so forth. Drink tons of water. You have enough symptoms to warrant an investigation into celiac disease. Make sure the doc does a FULL serum panel. Here it is: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Also can be termed this way: Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN IgG GLIADIN IgA Total Serum IgA Deamidated Gliadin Peptide (DGP) IgA and IgG INSIST on the full panel! Some people test negative on the screening (which is just 2 of the above) so don't let yourself be dropped down that rabbit hole.
  10. This is a talk Dr. Joseph Murray gave to the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan in Nov. 1996. Dr. Murray is a gastroenterologist and celiac disease expert and researcher at Mayo Clinic. I have been looking for this text for years. I had it once but my computer died and I lost many records including this one. I finally found it again. Dr. Murray makes a reference to dh being like land mines under the skin. Read the portion on dh. The whole thing is worth a read: Widening Spectrum of celiac disease
  11. Great ideas! Picnics, movies, art museums, concerts, kayaking, hiking, poetry readings, botanical gardens. Carnivals & fairs - you can buy the date things to eat & bring your own snacks.
  12. Oh boy! Really on the ball aren't they?
  13. Look for some preservative that is common to all of those items.
  14. It looks like she did have all the celiac tests and some more tests besides. I am not familiar with those other tests, what they mean or what they would be looking for. I'm sorry, I don't know what the Immunofixation is - have never heard of it before. I wish I had an answer for you. Maybe someone will come along who knows something about that. I will say, for now, don't freak out thinking she has cancer. Wait. Hold on to your hat. Sometimes we read about these things & they are very scary & then we find out it means something else. Besides, the doc looked at those right? How about emailing the doc & asking what that result means.
  15. Before I forget..... The thing with her not having an official celiac dx is that she really needs that for school & later for college so she can be protected and taken seriously by law. OK, what you wrote now & the timeline makes more sense. nO, there are no hard & fast rules for gluten reactions AND they can & have been known to change with each subsequent glutening. It's not very weird that she didn't react in early August eating a boatload of gluten but then had severe, instantaneous reactions later with so much less gluten. You're exactly right - symptoms do vary & change over time. BTW, just because she didn't react in August doesn't mean she wasn't getting damaged. Did you know there's such a thing as silent celiac? That's where there are ZERO outward symptoms yet there is/can be unbelievable damage to the small intestine. The body has amazing ways to cope with stuff at times. Boggles the mind! Also, over 50% of diagnosed celiacs did NOT present with GI symptoms. An allergic reaction, from what I understand, involves rash, breathing difficulties, swelling. OH, do you have copies of her celiac panel? What tests was she given? This is the full, current panel: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Also can be termed this way: Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN IgG GLIADIN IgA Total Serum IgA Deamidated Gliadin Peptide (DGP) IgA and IgG It's okay about the pushing back. You're a very concerned mom who is understandably stressed at this point. We don't mean to be pushy or harsh either. For our part, we so often see where docs tell the patient to go gluten-free before they get tested "to see of it helps". Well, that then blows it for so many b/c they then get so sick on a gluten challenge that they are unable to complete it. OR the test results are a false negative because the patient had been gluten-free upon doctors orders. This results in them never being able to get a dx and it's all because the doc didn't know the testing protocols. We've heard it thousands of times. I know my hackles raise up big time when I see that happening with yet another patient. It's so frustrating!