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PaulE added a topic in Celiac Disease - Related Disorders & ResearchCan Being Glutened Spike Your Ph?Went and got take out gluten free pizza, and noticed the person cut the pizza with the same knife as the other pizza. I would have said something, but he cut the gluten free pizza first, and afterwards cut the regular pazza with the same knie, so didn't realize that is all he was using.
My daughter has kidney disease and leaks protein when she has gluten, so I used a test strip this morning, and first noticed her sample was extremely cloudy. Immediately after inserting the test strip the PH spiked to 8, dark green the maximum reading indicating alkaline. Normally if she was glutened, her protein would have spiked. Her protein read negative, but I have heard if your PH is high it will make your protein reading incorrect. I recently switched from protein/glucose strips to strips which include PH, so I am used to the PH being around 6.5.
Does anyone know how being glutened affects your PH, or what a high PH means?
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PaulE added a topic in Celiac Disease - DoctorsConnecticut Doctor, Waterbury To Danbury Area?My daughter (age 22) is Gluten Sensitive, as discovered when her kidney disease (FSGS) went into remission as soon as she went gluten free. If she was accidentally glutened, she would spike on her urine test strips which we test every morning. She has tested negative for Celiac disease, and no I don't know which tests they did, and she is to scared of docs to ask! Her stomach has been bothering her since she went gluten-free (a year ago), and her gastro recently said she has IBS. She has not been eating much, so I would like to know if anyone can recommend a gastroenterologist between say Waterbury, CT and Danbury, CT, that has experience in Celiac disease. I can't imagine that she can't have celiac disease if we know Gluten causes her to leak protein, and causes scarring of her kideys?
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PaulE added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsShould My Daughter Get An Endoscopy?Brief summary (really!): Since she was a child my daughter has always had problems with constipation, never really thought much of it. In her early teens she began having some sort of heart flutter/palpitations during karate classes. Saw a heart doctor, and nothing really became of that, although she has small blood vessels. A few years later she started seeing a rheumatologist when she was 16 or so, for arthritis like symptoms, i.e. bone pain, joint pain, hypermobility. Was told she had some sort of connective tissue disorder, but was told to wait and see, possibly Lupus, and see how it manifests itself! At 19 she was diagnosed with FSGS, a kidney disorder, whereby her kidneys are being scarred and leaking protein into the urine, which is a symptom which we can measure with urine test strips. She also test low for Vit D. In the last few years she would have a lot of burping and gas. This past December she started to feel nauseous after every meal, gas, bloating, stomach pain, and was really upset as she has seen a lot of Doctors, and none have helped. I researched at Inspire.com, and we had her go gluten/dairy/egg free between Christmas and New Years. Within four weeks we had a kidney doctor appointment, and her lab results went from a high of 1,600 pcr (protein to creatinine) ratio in September, down to 51 pcr(up to 120 is normal) at the end of January. This number had been steadily climbing for three years, and her nephrologist was telling her to start considering steroids, which my daughter did not want to do due to side effects. It was rocky at first, finding the hidden gluten, but with the test strips we could see if she got glutened or not, and find the source. She now tests regularly on the test strips either negative, or trace for protein in the urine. She added eggs back in and no protein leak. She added dairy back in and no problems with leaking protein, but major stomach problems. She went off dairy again, but stomach problems still exist.
So, she still has stomach problems, and joint pain. She recently saw a GI doctor, and had a blood test for celiac and was negative (again!), although she has been gluten free for 6 months. She did not get a copy of the blood tests, so I don't know how they tested. I asked her to get copies. She also had some tests where she had to ingest some liquid and breathe into a machine for 3 hours, bacteria growth test or something? Then a test for the sugars in milk. All came back negative. The doctor put her on probiotics, and a diet for people with sensitive stomachs. She is back on dairy. She saw a foot doctor and x-rays are normal, so soft tissue injury from overuse she was told. Definitely not overuse, she tries to start exercising again by going for walks, but every time she starts up some joint ends up hurting her!
Should she demand to get an endoscopy? Clearly gluten has something to do with the kidneys leaking protein, if she has gluten like beer, the next day her test strips will be "+++" or "++++" for protein! I assume her joint and bone pain has to do with poor absorption of nutrients? A dozen or so doctors, and they take a wait and see attitude? We are in Connecticut, are there any celiac experts in this state?
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PaulE added a topic in Gluten-Free Foods, Products, Shopping & MedicationsTarget Brand (Market Pantry) Gummi Bears?My daughter has been gluten free since the new year, and we keep finding wheat hidden in various places. She sent me this message today: "i got a slight bloody nose at school today and felt lightheaded and got a headache afterwards. so i go nap now" She is college aged, but she attacked a bag of Target Brand (Market Pantry) gummi bears. The package does not say gluten free, there doesn't appear to be gluten in the ingredients list, but the website does not provide any allergy info, as far as cross contamination. Here is the website:
Does being glutened include a bloody nose, light headed and a headache? She said she was also terribly moody today (before eating the gummi bears), she did add back in dairy in the last few days so I don't know if that is part of it. She has kidney disease and we monitor with urine strips that measure protein leakage, and just found that by eliminating gluten does wonders for her lab and home tests. So we will measure with urine test strips in the morning and see if whatever affected her today shows on the stips.
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