Celiac: Anyone have any experience with malabsorption?

Posted by salinas22 @salinas22, Aug 30 12:12am

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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It will take at least 6-9 mos as per my experience. I do take additional supplements b vitamins d3 zinc. Find a good daily vitamin. Even something like balance of nature.

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I was diagnosed almost 10 years ago now. Keep eating safe like you are. Don’t be afraid of good foods. Watch for other things like microscopic colitis if your symptoms don’t improve. I agree with the comment above about a 6-9 month wait to feel better. Get a good RD to work with and follow “gluten dude”. He has a great app that is having a huge discount right now I think on a lifetime membership. My best advice is eat well like you are, be patient, and don’t let this rule your life. You have the diagnosis now, that is a huge step in the right direction.
My lifesavers are:
Edison grainery
Gluten free creations
Primal palate spices
Nuts.com
Kirkman Labs supplements
AIP diet
When trying to keep weight on, don’t be too afraid of some carbs. Watch for oats too, many of us can’t tolerate them.
You got this!!💕

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@jean9v

It will take at least 6-9 mos as per my experience. I do take additional supplements b vitamins d3 zinc. Find a good daily vitamin. Even something like balance of nature.

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@jean9v
Thank you for replying. I guess it will take time. I will look into supplementing more vitamins into my daily diet. Have a great day.

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@lighthouseceliac

I was diagnosed almost 10 years ago now. Keep eating safe like you are. Don’t be afraid of good foods. Watch for other things like microscopic colitis if your symptoms don’t improve. I agree with the comment above about a 6-9 month wait to feel better. Get a good RD to work with and follow “gluten dude”. He has a great app that is having a huge discount right now I think on a lifetime membership. My best advice is eat well like you are, be patient, and don’t let this rule your life. You have the diagnosis now, that is a huge step in the right direction.
My lifesavers are:
Edison grainery
Gluten free creations
Primal palate spices
Nuts.com
Kirkman Labs supplements
AIP diet
When trying to keep weight on, don’t be too afraid of some carbs. Watch for oats too, many of us can’t tolerate them.
You got this!!💕

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@lighthouseceliac

Thank you for your words of encouragement and recommendations of foods and the gluten dude. I will look into him as well. I appreciate you taking the time to respond. Have a blessed day and week.

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You are very welcome. I eat all meals at home and take food with when I travel. I shop when out of town and keep my food simple and separate from everything. Do it your way and make no excuses. This is a serious disease that you can control only if you set strict boundaries. Don’t expect anyone to understand, the less attention you draw by explaining it, the better off you will be in the long run. Hugs

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@lighthouseceliac, hello!
You gave some good advice!
I have only been at this for 3 years since diagnosis. I'm almost 70 y.o. and have begun to say what I believe needs saying. I listened to an international conference on celiac disease, annual (minus the Covid year) where they said that 81% of us don't go out to eat at all and 90% bring their own food when traveling. as you and I do!
Last year I spent 4 days in a hospice as my best friend of 50 years died from a brain tumor
When I arrived, they didn't want to allow me to use my own toaster!
At every turn this disease hurts!
When my husband and I tried to tour Masonicare retirement facility last summer, we were told they could not accommodate a gluten free diet, "not even a little gluten"?
The world needs to catch up!
If we had diabetes or arthritis for example, and if a company was making money on a drug for CD, we would have ads all over TV about it!
This is a serious chronic disease, as you said, that we did not sign up for and should not have to hide it from the world.
I intend to join the Beyond Celiac walk for a cure (at least an effective medicine)!
Also, there's the Celiac Disease Foundation. Both support research and that's what we need.
You are right, people look at us like we are the strange ones when they are the ignorant ones.
Part of me is angry, but I try to be calm and kind (even if left hungry).
Meanwhile, look after yourself! Others may not, but GF certification is our friend.

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@salinas22

@lighthouseceliac

Thank you for your words of encouragement and recommendations of foods and the gluten dude. I will look into him as well. I appreciate you taking the time to respond. Have a blessed day and week.

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Hello @salinas22 ,
I like Vitacost.com as a "mail order" source of gluten free foods and supplements. They have good sales, quick delivery, agreeable customer service.
Can you get a registered dietitian to help you? After diagnosis, mine was covered by my insurance. Some grocery stores offer their services for free, too.
The dietitian was a Godsend!
You can do this! It's not easy, and you have taken a good step getting here!

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I'm new to this platform. May I ask what type of Dr and tests helped you diagnose this?
Thx

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@tahoe1

I'm new to this platform. May I ask what type of Dr and tests helped you diagnose this?
Thx

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Welcome @tahoe1, I think a gastroenterologist is the specialist for the condition. Here's some information and FAQs on the condition:

"Your family doctor or primary care provider can order the celiac disease blood test for you. You can also schedule an appointment to speak with a gastroenterologist experienced in treating people with celiac disease. Additionally, if you already see a specialist such as an endocrinologist or rheumatologist, he or she may be knowledgeable about celiac disease and are likely to order the blood test as well."
— FAQs: Understanding Your Risk & Celiac Disease Screening: https://www.beyondceliac.org/celiac-disease/family-testing/understanding-risk/

Do you mind sharing what kind of symptoms you are having? Have you discussed them with your doctor?

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@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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@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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