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dadoffiveboys

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Everything posted by dadoffiveboys

  1. dadoffiveboys
    No.. the doctor was an "expert" and said I don't have DH just by looking at it. He was the head dermatologist at UVA. BTW - we no longer go to UVA AT ALL and I wouldn't recommend UVA for celiac. I'd love to have it biopsied but I doubt it will ever happen. My internal medicine doctor (that has a gluten intolerance) advises me now and doesn't recommend...
  2. dadoffiveboys
    They designed the tests to be positive for only REALLY bad cases - that's what I mean. My son's case was bad, but not REALLY bad so he was negative. Some also test positive w/o symptoms but everyone I know who had that didn't go gluten-free because since they had no symptoms they IGNORED the tests... This is what I mean by "what good are they". My opinion...
  3. dadoffiveboys
    I completely disagree with the gene test part. I am finding that with ONE copy of a celiac gene, any one of my children with that gene have gluten problems - you are right in not having 'celiac'.. but they WILL have a gluten problem! Do I think that 40% of the population has a problem with Gluten then? Absolutely YES! The gene test seems a better diagnosis...
  4. dadoffiveboys
    Yes - it is my primary and ONLY symptom ever diagnosed by a doctor. All of my boys had severe problems with Reflux. Now that the family is gluten-free, noone has had any reflux or asthma problems. BTW - alot of times asthma is caused by less severe Gastritis and reflux. I have the DQ8 gene and also have an atypical DH reaction (it's less severe and more...
  5. dadoffiveboys
    If the baby is exclusively breast fed (like all of our babies) this is a normal weight. You will see it pick up when the baby starts on solid foods - I wouldn't assume (ESPECIALLY at 6 mo) that this is failure to thrive.... My father had the same problem which eventually started to lead to Kidney failure. He stopped eating gluten and all of...
  6. dadoffiveboys
    This sounds like 'constipation' with D after. I found my children with gluten problems had to cut out MILK for a while. The milk (once the digestive system is damaged) caused them to 'back up' to the point in my youngest one of needing a suppository. Then the 'plug' would come out and have massive D.. enough to come out of the clothes on my one year old...
  7. dadoffiveboys
    Out of interest sake - I got my son's genetic results. Sure enough he inherited my DQ8 (0302) gene and has a DQ5 gene (0501). I guess this proves he's my son LOL. Anyways I heard the DQ5 gene is a 'gluten intolerant' gene - is this true? Anyway he is doing fine as long as we NEVER EVER feed him gluten (sounds kinda like the gremlins movie....
  8. dadoffiveboys
    My boys had a similar reaction to gluten (not so severe in each case though). Reflux and constipation were symptoms. Took them off gluten and within 3 days the reflux and constipation were gone. They had us using laxatives too and omeprizol (I think) for the reflux. Ironically, my dad had reflux his whole life and went gluten-free and his reflux has stopped...
  9. dadoffiveboys
    The lab didn't give me a DR type on the results, they gave me a negative/positive for DQ2/DQ8 only. Labcorp (where I had the test done) doesn't report the alleles on the 'doctor' form - they just said I was DQ8 positive... so I called the HLA testing lab (they provide a contact number) and the woman there said they do the full allele set and was more than...
  10. dadoffiveboys
    We also had my middle son tested that was diagnosed with failure to thrive - so it will be interesting to see what HIS gene's are and to see if mom contributed any to it. As a side note, one of my wife's sisters has celiac and her dad had colitis (which we think may have actually been celiac) from a young age... so my wife probably carries a gene as well...
  11. dadoffiveboys
    What do my results mean? I *JUST* had genetic results from LabCorp which came back DQ8 positive. They didn't report the allele's so I called them up and they told me on the phone I am this: DQA1*0302, DQB1*0402 -> DQ4 -> DR4/DQ4 gene haplotype DQA1*0302, DQB1*0302 -> DQ8 celiac gene -> DR4/DQ8 gene haplotype BTW I am caucasian...
  12. dadoffiveboys
    Are you sure he doesn't have a very severe food allergy too? I know in ALL of my boys (four so far) the FIRST sign of the gluten allergy was ACID REFLUX. And.. they ate lots of bread to 'soak' it up and got more acid reflux.. Originally they all got acid medications but now we don't need that junk because Gluten-free Casein-free we don't have that problem...
  13. dadoffiveboys
    Well my father and myself were negative to the blood test for celiac (probably because that's not 'exactly' what we have). HOWEVER - your symptoms sound EXACTLY like what I was feeling. I actually had to go on 800mg of Ibuprofin and muscle relaxants (at age 30!!) because I couldn't even walk (it was that bad!). Anyhow - I cut out gluten AND casein and...
  14. dadoffiveboys
    We use gluten-free oats.. and are using it along with rice as a 'first grain' to introduce to our newest baby. He seems to have no effect from it.. nor my other boys who can't have gluten or casein w/o breaking out IMMEDIATELY. We buy it from the Wyoming glutenfreeoats place. We do have to process it in the food processor and make it smaller though first...
  15. dadoffiveboys
    You'd have to ask which Ranch dressing they used. 1/2 of the Ranch dressing contain gluten and I would bet that was where the problem was..... You can also (maybe) carry your own salad dressing packets if you find the places you go to eat have salad dressing that you like that contains gluten.
  16. dadoffiveboys
    I'm in a household of 7 - my wife - the non-celiac, myself and the 5 boys. Whatever genes I have seem to have transmitted 100% to ALL of the boys as all of them cannot have gluten. My wife and ONE of the boys can have casein - the other 3 clearly cannot as well as myself. Our kitchen is Gluten-free Casein-free. My wife has her own bread she buys. My wife...
  17. dadoffiveboys
    If you eat out and get salads - make sure they dont mix the salad in the same bowl they mixed salad's with CROUTONS. It would defeat the whole gluten free thing.
  18. dadoffiveboys
    Yep you are right. After going gluten-free and still not feeling 100% I tried Lactaid milk (as a recommendation by my Allergist). He said, and I quote, "I think your reaction (that I was describing) is an intolerance to the milk protein and not lactose - drink lactaid and if you are sick - you are also allergic to casein." Well.. I was even MORE sick drinking...
  19. dadoffiveboys
    If you are releasing alot of proteins in the urine, look when you urinate at it. Not to be too graphic, if you have 'proteinuria' then you will have excessive foaming of the urine when you go to the bathroom. You can look about this on the net and find out information. You still need a urine test but it's something you can do. I have a similar problem...
  20. dadoffiveboys
    My middle son has the exact same profile - he's 4 yr old now and about 34 lbs (was aiming to be about 30 lbs or less if we hadn't taken him gluten-free a year ago). I ignored those tests and took him gluten-free anyways. My son had stopped eating all food (smart boy) and would only take the chocolate Gluten-free Casein-free formula/nutrion drink - pediasure...
  21. dadoffiveboys
    My father has the same symptom you share above - it went away after MONTHS of Gluten free eating. In his case, swollen ankles and feet was caused by his kidney failing - free proteins in the bloodstream can cause nephritis in the kidneys. I would DEFINITELY recommend you getting checked out for kidney problems (if you haven't been checked for this - it...
  22. dadoffiveboys
    You might have other food allergies. When I went Gluten Free I was still maintaining (or gaining) weight and still not 100%. I then found out I couldn't tolerate Casein either (milk protein). This is VERY common among celiacs - hence why alot of food and recipes are gluten-free/CF. After dropping Casein, I have been losing weight slowly but steadily. ...
  23. dadoffiveboys
    Ok - whole grains are better for you that's ALWAYS true. However, if you are allergic to a particular grain (aka wheat, barley, etc) then the HARM they cause is far worse than the benefit. Since you malabsorb (don't take in nutrients well) when you eat them - they cause great damage. WORSE - those grains cause you to malabsorb all of the OTHER non-grain...
  24. dadoffiveboys
    I take Allegra 180mg all the time for outdoor allergies (in which it works extremely well for me..). Sometimes though I need two Allegra 180mg in a day. Without it I would be miserable and be red eyed and sneezy and itchy and yucky all the time. For my gluten allergy symptoms - it seems to make my DH not itch. Other than that, I don't see an affect. ...
  25. dadoffiveboys
    I'll add my two cents.. I have five boys (only four are old enough to know since one is 6 months old) And.. with my kids history - my pediatrician said and I quote "Might as well SKIP GRAINS with the 6 month old and go straight to fruits/vegetables since he's probably allergic to it anyway!" so that's what we are going to do.... we are giving him...
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