Celiac: Anyone have any experience with malabsorption?

Posted by salinas22 @salinas22, Aug 30, 2022

I’ve lost 20 lbs since May 1rst. I was recently dx with celiacs 2 weeks ago in the middle of August. I’ve been eating healthy organic meats, fruits and vegetables since May. . Zero sugar or processed foods and zero gluten since being diagnosed 2 weeks ago. Does anyone have any experience with malabsorption and how long it might take for the intestinal-villi to heal and therefore gain weight? TIA

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@johnbishop

@salinas22, @tahoe1, @yellowdoggirl, @lighthouseceliac, @jean9v and others, I think you all might find the following discussion helpful. It has a lot of good information and links.

-- Best diet for Celiac recovery, aside from being gluten-free: https://connect.mayoclinic.org/discussion/best-diet-for-recovery-aside-from-being-gluten-free/

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ensign60 I was diagnosed with Celiac disease 12 years ago after losing 25 pounds. I work hard at gaining my weight back with at least 3000 Gluten free safe calories per day. Fourteen years ago I weighed 165 and in spite of eating healthy and a lot I have never managed to get above 145. As far as the Villa are concerned I have been told by several doctors that the villi is never totally cured but being careful of what you eat will keep it from getting any worse. I have been told that malabsorption is the cause of my continuing fight with my weight. I know I don't absorb calcium and I was diagnosed with Osteoporosis eight years ago and that caused my bone structure to weigh less. I take calcium daily and get a shot of Prolia every 6 months. Our only choice at this point is to eat carefully, exercise regularly and hope that a breakthrough medicine will be developed soon.

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Hi, I would find out if you also suffer malnutrition due to motility throughout digestive system along with your diagnosis. I have gastroparisis and severe motility entire digestive system. I only take liquid vitamins. I give myself weekly b12 injections, my b-complex is a liquid along with zinc, vitamin c and many others. Pills sit in my stomach forever. Give it a try. Feel better soon.
Joanne

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@ensign60

ensign60 I was diagnosed with Celiac disease 12 years ago after losing 25 pounds. I work hard at gaining my weight back with at least 3000 Gluten free safe calories per day. Fourteen years ago I weighed 165 and in spite of eating healthy and a lot I have never managed to get above 145. As far as the Villa are concerned I have been told by several doctors that the villi is never totally cured but being careful of what you eat will keep it from getting any worse. I have been told that malabsorption is the cause of my continuing fight with my weight. I know I don't absorb calcium and I was diagnosed with Osteoporosis eight years ago and that caused my bone structure to weigh less. I take calcium daily and get a shot of Prolia every 6 months. Our only choice at this point is to eat carefully, exercise regularly and hope that a breakthrough medicine will be developed soon.

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I do not have celiac, but SIBO and diarrhea have made it difficult to keep my vitamin D level up. I take a high dose and monitor results through the Grassroots group .
Have you tried any of the Bari Melts that are used for people who have had gastric bypass surgery and malabsorb vitamins. I tried a calcium/magnesium one looking for a way to absorb magnesium without triggering diarrhea. Sublingual absorption lets you bypass the stomach. I do that for vitamin B also because I get a stomachache from vitamin B.

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@ensign60

ensign60 I was diagnosed with Celiac disease 12 years ago after losing 25 pounds. I work hard at gaining my weight back with at least 3000 Gluten free safe calories per day. Fourteen years ago I weighed 165 and in spite of eating healthy and a lot I have never managed to get above 145. As far as the Villa are concerned I have been told by several doctors that the villi is never totally cured but being careful of what you eat will keep it from getting any worse. I have been told that malabsorption is the cause of my continuing fight with my weight. I know I don't absorb calcium and I was diagnosed with Osteoporosis eight years ago and that caused my bone structure to weigh less. I take calcium daily and get a shot of Prolia every 6 months. Our only choice at this point is to eat carefully, exercise regularly and hope that a breakthrough medicine will be developed soon.

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Like mothermary1, I too give myself B12 injections weekly.
One of the first symptoms of CD beyond the classic alternating constipation and diarrhea is pernicious anemia caused by inability to absorb B12 and Calcium!
What is unfortunate about the dramatic reduction of B12 is that B12 is not given enough credit for the positive roles that it plays in proper body functioning.
An example is its powerful anti-inflammatory capabilities. In the early stages of building my CD management process my MD would prescribe CRP blood tests then B12 injections and then a followup blood test.
The concept was that inflammation is as or more dangerous than CD and the fact that B12 reduced my high CRP levels made the periodic injections a significant management tool.
At 75 and having had my first CD symptoms 40 years ago, my management process is palliative and not curative! CD is only manageable and not curable. And the damage it can do prior to becoming gluten free is permanent.
The trick to dealing with CD is to pay attention to any new symptoms that develop, adopt any known methods for treating these new symptoms, and above all stay 100% gluten free!
Chris47 -

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What brand of liquid vitamins do you take?

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Celiac patients, keep an eye out for microscopic colitis, lymphocytic colitis snuck up on me, think celiac is not fun….you do not want this.

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@anniez

I do not have celiac, but SIBO and diarrhea have made it difficult to keep my vitamin D level up. I take a high dose and monitor results through the Grassroots group .
Have you tried any of the Bari Melts that are used for people who have had gastric bypass surgery and malabsorb vitamins. I tried a calcium/magnesium one looking for a way to absorb magnesium without triggering diarrhea. Sublingual absorption lets you bypass the stomach. I do that for vitamin B also because I get a stomachache from vitamin B.

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hi @anniez... Thanks for your comments. Fortunately diarrhea is not a problem for me unless I mistakenly eat something loaded with gluten. I do eat out fairly often so I ask a lot of questions of waiters and Chefs. I think I must absorb some amount of the calcium I take by mouth as my bone density test have shown slight improvement over the last couple years. The improvement however may be due to the twice a year Prolia injection I get. Good luck to you and keep up the work on trying to find the right combination of things that will help us be healthy and happy.
Ensign60

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