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squirmingitch

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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. egs1707. Are you in Canada? It's NOT a good idea to go gluten free between now & the GI appt. and here's why.... MOST of us have MUCH stronger reactions to gluten when we go back on it for the endoscopy. A lot of people have had such strong reactions that they have been entirely unable to complete the challenge and have to call it quits. This means they never get an official dx. It's your call, you make the choice. However, I will say that you don't have to eat a lot of gluten, a couple saltines or a slice of bread per day.
  2. For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute. I too have little faith in docs as I've had my share of being blown off, to misdiagnoses. The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.
  3. You're welcome! Yes, I too, hate waiting for lab results. Ugh!
  4. http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
  5. Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
  6. dp ronan, I just want to stipulate that this kind of comment can mess people up with their testing. It sounds like you're saying the op should go gluten free if the blood tests come back elevated. That is not true because an endoscopy should follow and gluten has to continue to be consumed right up until the endoscopy or it will skew that.
  7. pablito, here is the full serum (blood) panel. Make sure your doc runs ALL of the tests on it, not just 1 or 2. Insist!!!!! YOU are in charge. Remember that. Some people test negative on the most common 1 or 2 tests they run so it's always better to have the full panel run. 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 Remember that celiac disease is a genetically inherited disease so it's important for you to find out if you have it and if so, then your kids & all first degree relatives (siblings, parents) need to be tested every 2 years in the absence of symptoms but right away if symptoms present. Do not go gluten free after the blood work as if you get positive blood work, you will need an endoscopy which you'll need to continue eating gluten for. The pimple things may or may not be the celiac rash as there are many skin problems associated with celiacs.
  8. Below is copied & pasted from this thread: My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE. I would recommend him to the whole, entire world. I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having. I wish all doctors were like him. I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out. He's not like that. Good luck to you. There are recommendations on this thread too:
  9. Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid.
  10. 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.
  11. 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: http://www.glutenfreedietitian.com/vinegar/ 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.
  12. I doubt you will find a GI doc or any other doc who will put any credence in the Enterolab results. See: http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
  13. 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.
  14. 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 http://www.celiac.com/gluten-free/forum/10-celiac-disease-parents-of-kids-or-babies-with-celiac-disease/ Read this entire thread: Here's another: Here's another: And this: