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Bob J

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About Bob J

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  1. Thanks so much for taking the time to respond. I'm encouraged to tighten my gluten diet and be much more vigilant in the restaurant envrionment. I'm seeing a high correlation in the curve of my weight loss and the persistent incidents of getting glutened by contaminated foods at restr's. and the slow decline in my blood test results over the years. I have another CBC in June and another visit to the Hematologist in July. With my new resolves, we'll see how that goes. I'm also looking closely at starting some low doses 2-3 mg/day of chelated copper based upon some recent research. Cheers and good health. Bob
  2. Thanks Gemini. I need to clarify (seems like I get carried away explaining my history and forget the up-to-date issues.) I'm actually holding my own weight-wise now; have even gained 4 lbs since I've started being more "fanatic" about policing my restaurant food. Most all of my gluten poisoning came from there and I think I was in a revolving door with my the healing process; 2 weeks ok - then "bang" and a week of recovery. Course, I know you don't really recover in a week. One contaminated meal can set you back for weeks or months. One thing is clear, I stop losing weight and feel better when I get "fanatical" about my food policing and I lose weight when I get glutened and have the big "D" blowout. So maybe that's an indication I'm not refractory yet....? I know I've suffered from mal-nutrition and mal-absorption. That's obvious. However, my anemia has only been with the RBC to date, only recently did it start affecting the white blood count. I'm beginning to research the relationship of Copper deficiency and Celiac Disease. Along with my recommitment to policing the gluten, I may need to bolster my Copper content for a few weeks (2-5 mg/day) to help the White Blood Count. Any thoughts you have on that would be appreciated. You're probably right about the Doctors. You'd think in Houston there would be an adequate army of Doctors well-versed in celiac disease, but................I haven't found them. Thanks again for responding. Bob
  3. I was diagnosed Celiac in Sep 2008 via endoscopy. Prior to that, in 2005, I was diagnosed with a Thymoma, a tumor of the Thymus gland which is also considered a complication of the auto-immune system. After two rounds of chemotherapy, the tumor was removed with no further complications. However, during 2006 - 2008, I began to develop intestinal distress and by 2007-2008, I was having major gastric distress including what is known as "explosive" diarhea. After diagnosis, I followed the Dr's and Nutritionists instructions and did my best to become gluten-free. However, over the ensuing years, I have had bouts of "D" and stomach distress due to the ingestion of "hidden" gluten in restaurant food; even those that claim to have gluten free menus. (Sorry this is taking so long to explain). The short of the story is that before diagnosis and since diagnosis (Sep 08), I have lost 80 lbs - down to my high school weight. Also, my blood tests have periodically shown mild to moderate anemia; example following: RBC 3.12 Range 4.5 - 6.0 Hemoglobin 10.8 Range 14.0 - 18.0 Hematocrit 30.9 Range 40.0 - 54.0 Mean Copuscular Vol 99 Range 82 - 98 Mean Corpuscular HGB 34.7 Range 27.0 - 31.0 Recently, my White Blood Count (after taking 2 rounds of antibiotics and a couple rounds of steroids for pneumonia) was down to 3.7 range 4.0 - 11.0) All these years my Internist has glossed over the low RBC and weird HGB and HTC counts without much comment except hmmmm....."must be the Sprue". But now that the White Blood cound has also dropped, he's referred me to a hematologist/oncologist who is using unsettling terms like "possible myeloma or MDS" I've tried to help them connet the dots and look at my overall history, but they seem to be hung up on the white blood count. Bottom line, I feel great and am an active 69 year old grand dad who just took an 8-yr old grandson to Washington D.C. and I had no problems with all the walking, Metro rides, heat, and exertions of the trip. My question is: WHY DON'T THE M.D.'S take my Celiac Disease more seriously and try to connect the Dots? I'm constantly having to remind them of my history and my struggles with begin glutened, losing and gaining weight, diahrea, etc, etc. But the hematologist seems to be rather focus on everything but that...........And advice or comments you may have would be appreciated. I'm scheduled for another blood test in July and pending the outcome of that will determine whether he wants to pursue a bone marrow aspiration, etc. I've already gone through an extensive blood test for protens and 24 hour urine test to rule out myeloma and leukemia. These were negative. But he still insists we need to look at MDS if the next white blood count comes back low. Call me frustrated Bob!
  4. Gemini, I'm responding to a rather old post, but it's because the subject matter is of great interest to me and I wanted to a better understanding of your views on Celiac Sprue and low Red and White Blood Counts. I was diagnosed Celiac in Sep 2008 via endoscopy. Prior to that, in 2005, I was diagnosed with a Thymoma, a tumor of the Thymus gland which is also considered a complication of the auto-immune system. After two rounds of chemotherapy, the tumor was removed with no further complications. However, during 2006 - 2008, I began to develop intestinal distress and by 2007-2008, I was having major gastric distress including what is known as "explosive" diarhea. After diagnosis, I followed the Dr's and Nutritionists instructions and did my best to become gluten-free. However, over the ensuing years, I have had bouts of "D" and stomach distress due to the ingestion of "hidden" gluten in restaurant food; even those that claim to have gluten free menus. (Sorry this is taking so long to explain). The short of the story is that before diagnosis and since diagnosis, I have lost 80 lbs - down to my high school weight. Also, my blood tests have periodically shown mild to moderate anemia; example following: RBC 3.12 Range 4.5 - 6.0 Hemoglobin 10.8 Range 14.0 - 18.0 Hematocrit 30.9 Range 40.0 - 54.0 Mean Copuscular Vol 99 Range 82 - 98 Mean Corpuscular HGB 34.7 Range 27.0 - 31.0 Recently, my White Blood Count (after taking 2 rounds of antibiotics and a couple rounds of steroids for pneumonia) was down to 3.7 range 4.0 - 11.0) All these years my Internist has glossed over the low RBC and weird HGB and HTC counts without much comment except hmmmmmmmmm.....must be the Sprue. But now that the White Blood cound has also dropped, he's referred me to a hematologist/oncologist who is using unsettling terms like "possible myeloma or MDS" I've tried to help them connet the dots and look at my overall history, but they seem to be hung up on the white blood count. Bottom line, I feel great and am an active 69 year old grand dad who just took an 8-yr old grandson to Washington D.C. and I had no problems with all the walking, Metro rides, heat, and exertions of the trip. My question is: WHY DON'T THE M.D.'S take my Celiac Disease more seriously and try to connect the Dots? I'm constantly having to remind them of my history and my struggles with begin glutened, losing and gaining weight, diahrea, etc, etc. But the hematologist seems to be rather focus on everything but that...........And advice or comments you may have would be appreciated. I'm scheduled for another blood test in July and pending the outcome of that will determine whether he wants to pursue a bone marrow aspiration, etc. I've already gone through an extensive blood test for protens and 24 hour urine test to rule out myeloma and leukemia. These were negative. But he still insists we need to look at MDS if the next white blood count comes back low. Call me frustrated Bob!
  5. -Diagnosed Celiac 9-8-2008 at 65 yrs old: Endoscopy -Blood tests were negative.

    Lost 80 lbs in 4 yrs - mal-absorption & mal-nutrition 1/2 of it after diagnosis.

    Currently anemic - both White and Red Blood Counts are low.

  6. My bloodwork for Celiac was also negative (i.e, normal) but my endoscopy proved that I had Celiac disease, flattening of villi, etc. Bob
  7. Hi Jane, I'm rather new at Celiac.com as well, but I will reply. I sense your frustration with the lack of replies and I can relate. I have the gurgling sounds in my intestines, but it usually starts in my upper digestive tract(small intestines) and sounds like air and water gurgling in a water pipe. I now understand that my small intestine is reacting from gluten and the water is "gathering" to wash the undigested food out of my gut. This happens when I am glutened and is the harbinger of bad things to come a few hours later - namely the big "D". As the gurgles move into my large bowel, they become more like cramps and I know the inevitable is coming, so I stay close to the toilet. Don't mean to be too graphic, but think it's only helpful if we're completely honest. I've never had to bend double in the fetal position, because by the time I get to the cramp stage, I'm sitting on the "throne". You need to push your Dr's for a definitive diagnosis. It took almost 2 years for me to get mine and by that time, I had already lost 40 lbs. Opposite your experience, but I understand some gain weight instead of losing. I don't pretend to understand all the implications of that; I just know it's a mysterious disease and requires continued vigilance and management. Even after diagnosis, I lost another 40 lbs for a total of 80 lbs. Hidden gluten in Restaurant food, pot luck dinners, etc. I am now finding out that I am anemic (RBC) and my White Blood Count has even gone below minimum. I've recommited myself to managing my diet better and am doing better from the symptoms standpoint. I have another blood test coming in July and am hoping for some improvement there. I've had to become much more strict with waiters, Chefs, and restaurant managers and I'm sure they may get tired of the interrogation, but, by golly, I'm tired of losing my health to hidden gluten and just not going to stand for it anymore. You hang in there and push for a definitive diagnosis - be the squeaky wheel and insist on it!!! Then if Celiac is the culprit - you'll know what to do. It will take some time, but you will get better if you learn the diet and insist on strict compliance - from yourself and those who "feed" you. I'm 4 years out from diagnosis (endoscopy-confirmed flattened villi); blood tests were negative) and I'm still not fully recovered - but after battening down the hatches diet-wise, I feel much better and (knock on wood), I've not had the big "D" in several weeks now! I've gained 2 lbs (big for me) and the body "hum" is a bit diminished and I feel stronger; hopefully means the anemia is improving? Bob
  8. Thought I would take time to contribute to this one since it has been a "journey of learning" for me as well. I've been diagnosed Celiac for four years (endoscopy), and most all of my "glutened" episodes have been from eating out - and there have been many; so many that four years from diagnosis, I lost 80 lbs and have recently become anemic, both red blood, and white blood count. So I don't take risks anymore. I stay with known restaurants that I've had success with and who have gluten-free menus. Here's my list: Outback Steakhouse Carraba's Pei Wei P F Chang Rockfish BJ's Cotton Patch Here's some that do not have a gluten free menu, but where I've taken the plunge and risked getting glutened and won the bet; i.e., I didn't have symptoms within 24 hrs afterward (my symptons are bloating, gas, stomach cramps, and explosive diarhea within 8 hours). Choose your entree's carefully and make sure you don't get any crouton's, tortilla strips, etc. If it's a soup and it's cloudy or creamy, don't eat it until you talk with the manager or the chef - find out what makes it cloudy or creamy and make them "swear" it has no gluten. Well, make them state it clearly. Boston Market McDonalds Cheers, Bob
  9. Your post caught my eye. I was endo'd and diagnosed with Celiac Sprue in Sep 2008 after 1.5 years of diahrea and steady weight loss. Following that I've done my best to follow the Gluten Free Lifestyle. My problem is that I have continued weight loss and continue to be "slightly" anemic with low RBC, HGB, and enlarged average corpuscle volume (hope I got that right). Since diagnosis, I have lost 50 more lbs (4 yrs) and am at my high school weigtht. I try to be gluten free, but based upon some episodes of diarhea and terrible flatulence, I believe I have ingested "hidden" or "sabotage" gluten due to cross-contamination or mis-handling by restaurants. My Internist has been crediting the Sprue as he calls it, but goes no further. When I visited one of his PA's the other day, she pulled a chart of my CBC's over several months and she expressed concern with the marginally low and high counts. I seem to have leveled off in my weight loss, but still have occasional foot and leg cramps along with stomach bloat and cramps. Nothing intolerable, but I keep wondering if I'm one of those celiacs whose gut hasn't recovered sufficiently and I've got an absorbtion problem. Now the internist is referring me to a hematologist and he has done a full skeletal x-ray, a 24-hour urine catch, and more extensive blood testing. Have you ran into any of this? Bob J