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Should My Daughter Get An Endoscopy?

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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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After being gluten free or gluten light we cannot be tested for celiac without going back on gluten. If she was gluten free or gluten light before the blood tests then they would come out negative even if she is celiac. If she had enough damage and is getting cross contaminated enough she might still show damage on a biopsy but even folks on a full gluten diet have a high rate of false negatives.

You can either have her go back on a full gluten diet for at least a couple of months before a biopsy or if the diet is helping and she will stay compliant without further testing then just make sure she is being strict with the diet. There is a lot we have to do to be safe like our own new toasters, colanders, not sharing stuff like butter, mayo etc but we can help answer any questions you have.

Read as much as you can here and ask any other questions you need to.

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