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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    If you are IGA deficient that will negate the blood tests, you will have a false negative. I hope you are going to give the diet a good chance to help. You sound a lot like myself symptom wise in the early stages and I was very difficult to diagnose. One thing that may help along with the diet is to add some sublingual B12. Make sure it is gluten free...
  2. ravenwoodglass
    They don't understand because they haven't learned enough about it. You being their child makes it hard for you to teach them, just like teens don't always listen to the wisdom of the words of their elders, it works both ways. If you can get them to come here and read some posts on CC issues, the hassle and danger of restaurants, the different symptoms...
  3. ravenwoodglass
    Perhaps they have added wheat to it either as a thickener, binder or to up the protein level. Whey is a dairy product though. Below I have pasted info from the Whey Protein Institute Open Original Shared Link What is whey protein? A: Whey protein is a high quality protein powder from cow's milk. Milk has two proteins: Casein (approximately 80...
  4. ravenwoodglass
    Negative blood and biopsy does not totally rule out celiac. You can still be celiac with one or both. In the case of blood tests although they have improved the NIH still states a fairly large percentage that have false negatives on blood testing. As for the biopsy, you have 22 ft of small intestines and the damage can be patchy or in an area that the...
  5. ravenwoodglass
    You really need to come to work prepared with what you may need. It is not helping your stress levels to be glutened as that will only increase the amount of physical stress your body is under as well as increase the mental stress because of the neurotoxic effects of the gluten. You also may find you don't heal as quickly and may need the brace and have...
  6. ravenwoodglass
    I am glad your damage is not severe enough yet gut wise to be a definative diagnosis of celiac, or thought to be one. Your blood work is pretty clearly positive and I hope you are aware that the diagnosis of 'just' gluten intolerance does not mean that you are not suffering damage if you injest gluten. The damage can effect much more than the gut and be...
  7. ravenwoodglass
    Unfortunately the reaction can last that long, it's takes time for the antibodies to 'deactivate'. Some of us will even notice a pattern to our reactions after we have accidentally gotten it again after being gluten free for a while. If you are having stomach pain some find Pepto Bismal to be effective and if energy, fatigue and brain fog are also an...
  8. ravenwoodglass
    I know a month seems a long time when your child is suffering. How ill is he? If you tell us what his symptoms are someone may know of something to make the month easier. In the meantime call your doctor and ask if you can get a lab slip for a full celiac panel incuding a total IGA. The incidence of a false negative on blood tests is higher for children...
  9. ravenwoodglass
    It is frustrating at first. As to the lotion, Suave and Dove will clearly label gluten containing ingredients. The Giovanni line also has some a lot of gluten-free products if you prefer organic. Garneir also has a lot of gluten free products although I haven't checked their lotions. I use their shampoos and conditioners as they are also soy free (I...
  10. ravenwoodglass
    It can be difficult to diagnose celiac, especially in children. The fact that your symptoms resolved when you were taken off gluten was significant. Your Mom may not be a doctor but as a nurse she does have valuable knowledge. You mention that you had a colonoscopy but not an endoscopy. If you need a doctor derived diagnosis then an endo needs to be done...
  11. ravenwoodglass
    Thank you so much for posting that. I missed the soy under the natural flavors, now I know why this mayo doesn't agree with me....... I had to go check my label and the label on my jar doesn't state that the flavors are soy derived. They must have realized that being an allergan it does need to be listed. I had been wondering where soy was sneaking into...
  12. ravenwoodglass
    I think you should just go back to being gluten free. When you are diagnosed as a child and then put on the diet you heal. It can take some time before you have enough damage to become clearly symptomatic again. You now have enough damage again. You don't need a doctors permission to be gluten free. Have you told your doctors you were celiac as child...
  13. ravenwoodglass
    There can definately be adverse effects to the brain. If you do a search with celiac and neurological as the key words you will find a lot comes up. Hopefully you are avoiding gluten and the other stuff you are intolerant to. Sublingual B12 can be helpful with brain issues for us and if you are not already taking it you may want to start.
  14. ravenwoodglass
    Excellent point. If the referral comes through your doctor what you should be seeing is an RD. Don't just look one up in your phone book. Also if your MD writes a prescription for the visit your insurance may cover the cost.
  15. ravenwoodglass
    I am so sorry this has happened to you. Don't be too hard on your parents, it used to be thought that celiac was a 'child's' disease and that they would outgrow it. We now know that does not happen although it can take awhile for symptoms to become severe again. On the good side you now know what is going on and you have found a good place for info and...
  16. ravenwoodglass
    A visit to a nutritionist might not be a bad idea. Many of them are not great at knowing a lot about the celiac diet but for info on a balanced diet they can be good. There are also many books that can be helpful. There are also a lot of knowledgable folks here so you might want to do another post asking for advice. Give the diet some time and don't...
  17. ravenwoodglass
    Thanks, I didn't realize his expression until I got home and downloaded the the pictures. He was not a happy camper to have my camera lens in his face. I was not a happy camper either when a couple hours later I realized I should not have been breathing in all the grain dust that was in the exhibit. Not a good time last weekend. Duh.
  18. ravenwoodglass
    No the original tests were not wrong. You are doing a great job of keeping her gluten free! Keep it up.
  19. ravenwoodglass
    Start out with whole foods, unprocessed. Fruits, veggies, fresh unpreseasoned meats, nut butters, beans, rice, unseasoned, potatoes, sweet potatoes. Try to avoid processed foods as much as you can. It is also a good idea to delete or strictly limit dairy until you have healed. Go easy on the specialty gluten free baked goods at first as many have ingredients...
  20. ravenwoodglass
    Your son's symptoms and the postive test make it pretty certain that he is one of the 'family'. If you are going to have them do an endoscopic exam on him, which also has a risk of a false negative, you need to make sure to keep him on the full gluten diet. If you are not going to do an endoscopy then go ahead and put him on the diet.
  21. ravenwoodglass
    I've done one deliberately twice. The first time I was under an allergists care and I reacted with severe D and an increase in my other celiac related symptoms by day three. My reaction was violent and the allergist instructed me to discontinue the challenge and referred me to a GI. The GI of course ordered me to do another challenge and my reaction was...
  22. ravenwoodglass
    I noticed that also. The descrition of the rash sounded so much like DH that I was going to suggest she get it biopsied until I saw that. As stated a diagnosis of DH is a diagnosis of celiac. As for depression, I think many of us have had antidepressants tossed at us repeatedly over the years. That is not to say I never had issues with clinical depression...
  23. ravenwoodglass
    Since you have had the biopsy now would be the time to start the diet. You had positive blood work and the biopsy procedure does have false negatives for many reasons. Your body may give you the answer before you even go back for the biopsy results. Eat whole unprocessed foods to start with a minimum of gluten free specialty foods. There are some of who...
  24. ravenwoodglass
    There are a few of us who will react to gluten grain alcohols and vinegars. Not many but you may be one of them. If you live near a Wegmans they have a few pickles that are made with nongluten grain vinegars and those are labels as gluten free, the ones with gluten grain distilled vinegar do not carry the gluten-free label. I either get their bread and...
  25. ravenwoodglass
    Since those have never been something that was considered safe I am glad they finally got it on the label. At least now we clearly know they are not for us.
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