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About Ed_G

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    Manchester, MD

  1. Mine is a very fine tremor in my head. Does anyone have this? Any theory how to improve it, say B12 twice a day instead of once, or...?


    I would suggest going to a neurologist for any of these problems. You have to find out whether these problems are neurological in nature of caused by celiac.

    Ed in MD

  2. Based on the following symptoms, I was tested for celiac disease:






    -joint pain


    -lack of energy

    -recurrent miscarriage

    ....aaaand the blood test says no. My question is, is it worth pursuing with my doctor? He seems to think that if the blood test is negative, that's all there is to it.

    I went gluten-free for a few months last year, before going back on the gluten to get tested. I felt so much better! My stomach felt fine, I wasn't feeling like I was slogging through molasses all day. I've felt like that all my life, so it was weird (but great) to see what it felt like NOT to be that way.

    Any thoughts?

    I believe you either have celiac or gluten intererance, but going om the gluten-free diet probably caused a false negative result. You can either go on the gluten diet for a few months in hopes of a positive test result or go gluten-free, forget about about testing, a feel a lot better.

    Ed in MD

  3. It's been rather strange with me. I am famous for suddenly falling asleep at the strangest moments, and yet I have frequent bouts of insomnia. When I am overcome with fatigue it seems that I am suddenly assaulted by it, including a nice headache that only closing my eyes will alleve. Caffeine and enforced activity can delay it somewhat, only pushing back the hour of reckoning when I'm finally of my feet and my body just shuts down on me.

    Ed in MD

  4. I am totally new to this. If I product does not contain "wheat" does that make it gluten-free?

    I am wondering about Barbara's Puffins Cereal Original.

    Here are the ingredients:

    Yellow Corn Flour, Corn Bran Flour, Molasses (Unsulfured), Oat Flour, Expeller Pressed High Oleic Oil (Canola and/or Sunflower), Salt, Baking Soda, Vitamin E (Natural), Vitamin C

    On the website it says only the Rice Puffins are gluten-free. Could someone please educate me on what makes this product NOT gluten-free? Is it just that it is processed on a wheat machine? Or are there ingredients that should be avoided.


    Their honey rice cereal is gluten free, but the others are most definitely not because of the oat flour, which is a magnet for cross contamination.

    Ed in MD

  5. I don't know how old your boyfriend is, but back when I was in my 20s I was 125 pounds. I weighed 63 when I was in the sixth grade, about 75 in junior high, began college at 95 lbs, graduating at 115. I am now 160 pounds and in my 50s.

    You seemed to have eliminated many of the foods I would have suggested. Has he been tested for other allergies? While you eliminated quite a few foods, you did not say whether your boyfriend was tested for them.

    I don't know how long he's been off these foods, but assuming you eliminated the offending food(s), he should be gaining weight quickly. When I was first taken off gluten (when I was two) I grew about six inches and nearly twenty pounds in six months.

    I hope this helps.

    Ed in MD

  6. All I can tell you is that I was colicky as a baby also. Actually I had the classic symptoms from the very beginning, including a distended stomach. The family doctor just happened to hear of celiac (This was way back in the 50s) and suggested that my parents try the diet on me. And it happened to work.

    It's interesting that you mentioned your daughter having a vivid imagination and dreams. I also tend to have a pretty wild imagination, and a a young kid I had this recurring dream which I was lifted off the ground. It frightened me terribly. I would never think of that being even remotely connected to celiac. I need to hear from others on this.

    I heard that some kids with celiac can have neurological problems, usually something similar to ADHD or being bipolar. I can't exactly help you there....while I have epilepsy it is unrelated to celiac.

    I never really had any stomach problems either -- eaten gluten never caused any pain. It seems that after the first two years my celiac went into a "silent mode" in which I didn't show many symptoms at all, except that I was rather on the short side, terribly thin and lightweight, and constantly hungry. I did, however, have floating stools, occasional d for no apparent reason, and was constantly passing gas. I said that i had a cast iron stomach, but the rest of my digestive system seems to be garbage.

    I hope this helps. I would suggest that your daughter go completely gluten-free just to see what happens. Or you could have her tested.

    Ed in MD

  7. Does anyone know if the Ore-Ida site keeps their gluten free list updated?

    They do not have the Extra Crispy Seasoned Crinkles or the Extra Crispy Seasoned Tater Tots on their gluten free list. I looked at the ingredients at the store but did not see anything that was gluten in them so I got them.

    I've had the EC Seasoned Crinkles before with no problem but tonight I looked at their list to check out the Tater Tots and am now not sure what to do.

    Has anyone had any of the fries they carry that are not on the list but the ingredients look safe and not had any problems with them?

    Thank you

    While I don't know about Ore-Ida in particular, in general I look askance at all seasoned fries. Every single brand of seasoned fries I've seen has wheat in them.

    Ed in MD

  8. I've been getting rashes for a long time, but they've never really bothered me that much. I guess I'm so used to it I don't really think about it. (I think a doctor once suggested infected hair follicles?) It's little red dots that are spread out, never patches (unless I wear jewelry).

    It sort of comes and goes on my thighs, but it's there more often than not. Occasionally I get a mild rash on my stomach as well. I always have acne and a mild rash on my back and chest. I don't wear jewelry because my skin is so sensitive that I get a rash (a pink, itchy, raised patches) from watches/braclets and necklaces.

    Does this sound like it's related to celiac disease, or do I just have sensitive skin?

    It seems to me that you may have DH. I've always had, especially during my teenage years when I wasn't watching my diet, these red bumps and splotches on my back and sides. People even called me "acneback" I had so much. Does it itch at all? While mine did not itch, it was awfully dry.

    Ed in MD

  9. I'm 5'4" on a good day. My mom is 5'0 1/2" and my sister is 4'11 1/2", so celiac may not be the culprit in my lack of height. And while I am currently about 150 lbs., it took me years to gain that weight. And like Susan, I was also reintroduced to gluten after diagnosis and undergoing the "banana diet" for a while.

    Ed in MD

  10. Actually, two months after going gluten free I got the flu worse than I ever had before. I think part of it has to do with your immune system being 'busy' healing your villi, but also that your body is now 'realizing' it's vitamin deficient as well. I've seen it a few times that people are more prone to bacterial or viral infections in the 6-9 months after going gluten free. It also probably has something to do with the stress of trying to figure out gluten free life, that was more stressful to me than being sick was, although it is a lot easier now with all the tools out there.

    I have a similar experience, though it doesn't have anything to do with celiac. I have epilepsy which beagan to develop when I was about 14. Before then I got all sort of colds, fevers, stomachaches, the works. But since then, hardly anything. No fevers, and except of sinus problems, nothing. Now I don't believe that i never caught a cold since then. But I do believe my epilepsy co-opted the symptoms. In other words, instead of fevers, I had seizures.

    Just putting my two cents in.

    Ed in MD

  11. Hehe font and color fun!

    Gluten reintro'd for me at age 5.

    And I do mean "AT" age 5.

    Mom was happy to give me a normal bday cake on my 5th - exactly per Dr's orders.

    Was your reintro also at age 5?

    I believe it was a little before that time Tom. I don't remember if it was all at one time or slowly though. But I always refused to eat bread -- I hated it.

    Ed in MD

  12. Amazes me that it wasn't until the 50s that wheat was connected to celiac, tho the word 'celiac' originated in . .. . .what . .. 350BC??

    And Rye wasn't discovered as harmful until at least after the mid-60s. I found out a few days ago that the Dr who dx'd me as celiac (she was european so was more aware of it than US docs back then) told mom to give me rye as one of the wheat replacements!! :o:o


    That's why I refer to that period as the "Stone Age" :rolleyes: . There was way too little real knowledge and way too much misinformation about celiac disease at the time. If the knowledge was available, gluten would not have been reintroduced into my diet as a child.

    BTW, brain cells ane unable to reproduce after they were damaged. The dead ones are covered over with scar tissue, but that's it.

    Ed in MD

  13. How can I describe my symptoms? It depends on how old I was. In my first two years, it seemed that I had almost everything -- D, weight loss, bloating and distended stomach.....everyone, including my pediatrician, thought I was was going to die. Later, when I was older, I was still terribly underweight, since wheat was reintroduced into my diet. I also developed enough red pimples on my back and sides (some of which I still have), that I was called "acne back" at times. While I do remember fatty, floating stools and occasional diahrrea, I didn't pay much attention to it until my late 30s/ 40s when breaks if D became much more common. It was then when I began to take a hard look at a part of my medical history that I pretty much trivialized, and started began a gluten free diet.

    Ed in MD