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About Marlie

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  1. I second potato flour. Used that before I ever heard of celiac/gluten intolerance. I made pie crust recently which everyone liked. Do not over mix. You want pea sized lumps of butter and it must be very cold. Used cup for cup flour.
  2. I do not like bob's red mill. It's too gritty. Tried king Arthur and did not like that either. Tried mixing flours but got bored. So far Jules or cup for cup we like best. Better batter I have not tried yet.
  3. Refluxing does not necessarily have to be acidic based. There is no acid reflux as well. My child had both reflexes and MEDS did not stop the refluxing. Might want to google that.
  4. Since you have positive results for reflux, do you follow a GERD diet? You don't mention if you take any medications for GERD. These things may help you. You can also try a gluten-free diet to see if that helps. If none of these things help I would do further investigate your reflux.
  5. You can also have non acidic reflux which does not react to medications well. The only way to really know is to have a 24 hour PH impedence probe. This is how they differentiate between acid and nonacid and this is fairly new to the medical world.
  6. You might try getting a 24 hour PH impendence probe to check your refluxing. Medications did not work for my child.
  7. I would recommend you stay away from all foods that are known to trigger GERD. Have you tried any medications for GERD? There are two main types of meds to treat GERD. Then I would go for further testing such as the 24 Hour PH impedence probes and a Barium Study. A really good ENT should be able to see signs of GERD in the rear of the throat. Also, does your child have asthma or sinus/tonsil issues? Really bad refluxing can cause pulmonary and ENT problems.
  8. Have you had 24 hour impedence ph probe or a barium study? These tests will tell you alot about your GERD. My daughter had a Nissen and its a good thing she did. She was refluxing all the time and it wasn't just acidic on all medications used to control GERD. At the time she was Gluten free, Grain Free, and Dairy Free. She only ate about five foods and still was vomiting every time something entered her stomach. She had a structural abnormality and no medicine would work or would ever have. She had it done robotically with very little scarring. Would I make the same decision again? Yes, absolutely.
  9. My daughter suffered from terrible neck pain and headaches and it was the sinuses. You might consider looking into a sinus infection. We suspect that was all caused by reflux in hindsight. Good luck!
  10. Hi! My daughter has been sick a long time. Initially thought it was Celiac, but I have been questioning that and may in fact be but I thought I would share what we learned. The gluten-free diet worked for a while, but became sicker with time including her asthma. About seven months ago we got lucky and an ENT probed her and found she had acid reflux. Over the counter antacids did nothing and she developed awful diaries, so I put her on Prilosec. It helped some but she was vomiting nonstop. Took her to an aero digestive clinic After she had an upper GI series barium that showed severe reflux. They did two impedence ph probes, one on 80 mg Prilosec and one on nothing. In the end we opted for the Nissen. What they found in surgery, had my husband and I speechless. Her stomach was completely fused to her diaphragm, with no esophagus extending down from the diaphagm, the esophagus was not narrowed as it approached the stomach as it should, and so on. It was a mess. Prior to this she was down to eating at most a dozen foods, and prior to surgery eating only three. Everything was regurgitated even water. We are feeling extremely grateful to the doctors who found this after years of illnesses. Best of luck!
  11. If you are not getting better on a gluten-free diet and you have symptoms of GERD try antacids or a proton pump inhibitor which you can buy over the counter. An ENT can also look to see if you are suffering from reflux. Reflux can make it very difficult to sleep, cause terrible chest pain, asthma, sinus infections hence sinus headaches. My child went gluten-free after positive celiac blood work but negative biopsy and genes but continued to get sicker after initially feeling better gluten-free and we now know she has gerd. Best wishes.
  12. My child had severe stomach pain about a year and a half ago and everyone thought it was appendicitis so was sent to ER. After 2nd trip to ER in 24 hours they did an xray and found a clog in her intestines. Fortunately they did Celiac testing while she was admitted and the DGP IGA and DGP IGG tests were positive. About a month later they did an endoscopy which showed no damage to the Villi and negative for genes but had lymphocytis (sp?). After being Gluten free due to initial testing, went back and saw GI who said she wasn't Celiac, so we slowly added back Gluten. Six months later we took her back Gluten Free after lots of post nasal drip problems. If she eats Gluten she will have severe stomach pains and bloat. I don't care what the doctors say but she has issues with Gluten and I don't need a prescription to manage it, so I don't really give a darn. Blockages were never a problem until that one time, but she has been sick with many other things, so I guess we kind of got lucky. By the way, she was negative on all other blood panels.
  13. Is it possible the birth control pills change dosages each week? Some Birth Control Pills do not give a consistent dose through the month but change weekly. Just a thought.
  14. It's difficult to remain gluten free as we all know and I don't think it is unusual to experiment with gluten to see h ow gluten does effect our bodies. We did. I am the mom of a teen who had positive DGP IGA and IGG but neg biopsy and genes. Initially I was told celiac and immediately had her gluten free. However, she was still sick and we found a long standing severe sinus infection where her sinus could not drain. She had surgery where they rebuilt sinus and drained it. Long story short she came home from surgery crying in joy as to how good she felt, not too long after that met with GI who said it wasn't celiac. So we slowly added gluten back into diet for a myriad of reasons and all was well for months. About six months later she started getting chronically sick again and has since gone back gluten free but is still ill while we search for a resolution to her current health problems. And by the way, before she went gluten free a year ago I was noticing that eating pizza was making her sick but I never put two and two together. No other food would create the same feeling of illness. I found it odd and still do. I wish you the best of luck!
  15. I'm with you that doctors ignore labs all too much and I sometimes why they even bother to order them. A doctor the other day mentioned to methe adrenal glands specifically cortisol production.
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