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Worriedtodeath

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Everything posted by Worriedtodeath

  1. Worriedtodeath
    You make a good point Tim. We should always consider every possible angle before going down a rabbit hole only to find ourselves back to where we started in perhaps worse condition. It's not an easy decesion to make. With Celiac even though there is a definite dx criteria to meet, there seems to be a wide and varying application of that criteria by various...
  2. Worriedtodeath
    Positive blood work and negative bisopy is common. I agree with Ursa Major. What are you going to do if it is negative? If you speak with a pathologist, they will tell you that the biopsy was never intended to determine the Celiac dx but to rule out other gi issues and possibly confirm villi damage caused by Celiac. GI's tend to live or die by those...
  3. Worriedtodeath
    We started this when my little girl was 12 months old. By 18 months it was decided we had to see a gi and do the scope to test for Celiac. Despite being on a heavy gluten diet for 96 days, she did not test positive either biopsy or blood. THe gluten challenge only worsened our daughter's problems. She is deficient in fat soluble vitamins to the point we...
  4. Worriedtodeath
    They should be formed. In my daughter the mucos in the stools is caused by milk/dairy/casien/lactose consumption. When she gets glutened, it comes out either mushy (depends upon what she ate) or sometimes it looks the same as it went in. We did a strict fruit/veggie diet with little else for about a month or two before introducing any processed foor or...
  5. Worriedtodeath
    Just wanted to comment that my daughter when we were first going thru this battle (she's negative all the way around) never ever showed symptoms before 11 days of ingesting gluten. I tried it three times with different forms of gluten. I feed her the same diet every day for three weeks. Only fruit and veggies. Each time I introduced one new food that...
  6. Worriedtodeath
    Forgive if it is disjointed but I'm trying to answer quickly and all at once LOL! Thanks about the cod liver oil. I'll get some of that (not castor oil ) We probably should all take some. We never use sunscreen but start early in the year with few mintues here few minutes there and then bulid up to full body exposure and then lengthen the time...
  7. Worriedtodeath
    I had this problem with the mixer and dough hooks until I saw 16 YEARS of trying that I was putting the hooks in the wrong holes. That fixed the bread "blob" He now stays nicely in the bowl and rarely ever creeps up to encase the mixer and fling himself onto the walls!
  8. Worriedtodeath
    Hate to bust everyone's sunshine theory but as my husband told me (I subscribe to that camp as well) that she has been outside 4-5 days a week for 2-4 hours since March for baseball and practice. Saturdays those hours are between 10-2:00 and the weekdays are from 4:-8:00. We are in the deep south so sunshine is abundant and clothes only what's decent for...
  9. Worriedtodeath
  10. Worriedtodeath
    I nearly cried reading that line. Even my husband thought I was nuts for screaming over "cheerios" poop. I can tell everytime she sucks down a cheerio - the poop is very distinctive! Thanks for stating that line! It helps reassure me we are that group of seronegative Celiacs. Stacie
  11. Worriedtodeath
    You may also have discovered the ugly monster CC - cross contamination. IF you were a baker or used flour, you may have transfered flour to other food stock like spices or salt or such stuff. Plus, toasters, spoon, pans, pots etc could have traces of gluten hiding in them. I had to restock most of my spices especially the ones I used during pie season...
  12. Worriedtodeath
    The reason we found it to be a hard decision was because we had an exteremely sick child with no doubt very negative bloodwork and had 3 drs screaming this was Celiac and the biospy was to rule out any possibilty of anything else before commiting her to a gluten free diet for life. It was hard to look at them all and say No, we'll do the diet and then see...
  13. Worriedtodeath
    My daughter's vitamin D is low. SHe's 2 years old. Has been on the Gluten-free Casein-free diet for 4 months now. She drinks almond milk and has almond meal in her bready stuff. the acutal test was Vitamin d, 25-hydroxy 24.9l ng/ml range 32.00-100.00 Her calcium was calcium, ionized, serum 5.5 mg/dl range 4.5-5.6 phosphorus, serum...
  14. Worriedtodeath
    My daughter's (2 yrs) cbc came back. It seemed fine but I was wondering what would cause white blood count to drop from 13.0 (sick, on gluten and 10 months ago) to 7.4 today (off gluten 4 months) Both results fit within the normal range but just wondering if a drop is normal. And her platelet count went from 338 to 297. all in normal range but just wondering...
  15. Worriedtodeath
    This is an extremely personal choice. It can have grave results or it can be a snap. The problem lies in the fact that if the biopsy comes back negative , what will you do? Will your Gi support a gluten free trial?? Will he want to do other testing?? What will he do if it comes back negative???? And if he tells you well this is a classic text book case...
  16. Worriedtodeath
    That's what I said to when I read it! WOW! would be interesting to see if current research has it backwards. That Celiac isn't the autoimmune issue but is a symptom of immune deficency that results in Celiac which in turn triggers other immune diseases. Maybe lacking certain IG causes the problem or sets you up for the problem. Would be interesting...
  17. Worriedtodeath
    After reading this makes me wonder if everyone who has negative Celiac tests should get checked for CVID Open Original Shared Link Hope the link works if not go to Wikipedia and search for CVID Stacie
  18. Worriedtodeath
    Thanks everyone!! all that time in the kitchen has paid off! I agree fiddle faddle that something about certain allergies is different. I really wonder if it has to do with which Ig is involved.... I feel that IgE's can be outgrown or lessened or worsened in some cases. I don't think there is much else known about IgG and all it's subclasses and IgM...
  19. Worriedtodeath
    THe first sign I see when anyone around eats dairy is horrible brain fog and gluten makes them evil. I hadn't thought about one day everyone NOT reacting to gluten or dairy in some noticeable way that you could mark up to what you ate. I'm still so stuck in controlling gluten that a day when we don't run to the bathroom dying from cross contimanation hadn...
  20. Worriedtodeath
    That's why the intestional allegry and leaky gut research is so necessary. I'm pretty sure there is not any research or long term studies following milk allergy/wheat allergy kids who's symptoms disappeared and went back on those two and what happened. We're just now mainstreaming the idea that you can be "allergic" to something and have no IgE response...
  21. Worriedtodeath
    Seems that my ped has been doing some research and has come across some stuff about an actual gluten allergy instead of intolerance. Much like milk allergy vs milk intolerance. There is a difference. She didn't feel that she could outgrow Celiac/intolerance but if it is this new "allegry" then it stands to reason she could outgrow it like kids do wheat and...
  22. Worriedtodeath
    I took the baby back to the ped for her 2-year well check. 2 months ago she was in there for a follow up visit to discuss the idiot gi
  23. Worriedtodeath

    ARCHIVED I Need Stats!

    Worriedtodeath posted a topic in Doctors

    I hear tossed around stats like 30% of biopsy proven Celiac are blood negative, 87 % under the age of 2 have neg blood and biopsies and so on
  24. Worriedtodeath
    How old was she again when tested? Did they run a total iga count? IF she is IGA deficient, then some of the Celiac tests will come back negative no matter what since they depend on IgA numbers. I'm wondering why nothing was detected. Even my daughter's .1 was recorded on her lab results. But if this was several years ago as I think I read, then that...
  25. Worriedtodeath
    HI!! Now that the first initial months of getting used to gluten free/dairy free and finding out what we liked, I am now trying to whittle down the old grocery bill. I
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