Malabsorption

[Mark McGarrey]

I was diagnosed with celiac in September of 2021. Mostly because of unwanted weight loss. 50 lbs. I have been gluten free since diagnosis. Is there anyone on here who has dealt with malabsorption and if so how long before you could start putting some weight back on?

[Scott Adams]

Welcome to the forum! So you're just under six months on a gluten-free diet, and I will have to assume that you're doing a good job, as even trace amounts, for example at restaurants, might prolong your recovery. Depending on the condition of your villi damage (I assume you had some), it can take 1-2 years for that to heal, but you really should start gaining weight again soon. Are you taking vitamin and mineral supplements? 

[trents]

Mark, it might be a good idea to have a celiac panel serum antibody test done to gauge whether or not the villi are rebounding or if there is still a lot of inflammation going on. And I echo what Scott said about eating in restaurants or eating at others' homes where you cannot control ingredients used and you can't control cross contamination.

A study done in the last year showed that most people who claim to be eating gluten free really aren't. They are actually eating a lower gluten diet. The study indicated this was particularly true of those still eating out.

And as Scott suggested, it would be wise to put yourself on a high potency B-complex and about 5000IU of D3. Costco's Nature Made brand are excellent choices. Because of damage to he villi, most celiacs experience vitamin and mineral deficiencies.

[Mark McGarrey]

Trent’s thanks for the information. I rarely eat out and I’m pretty good about reading labels. May have some cross contamination with marked gluten free products but I am careful. It’s been a scary year or so. Thanks again

[Mark McGarrey]

3 hours ago, Scott Adams said:

Welcome to the forum! So you're just under six months on a gluten-free diet, and I will have to assume that you're doing a good job, as even trace amounts, for example at restaurants, might prolong your recovery. Depending on the condition of your villi damage (I assume you had some), it can take 1-2 years for that to heal, but you really should start gaining weight again soon. Are you taking vitamin and mineral supplements? 

Thank you for replying Scott. I am on vitamin and mineral supplements. Iron, magnesium, d3 and b12. My weight is somewhat steady. Never thought I’d be this petrified of a scale. I know it may take a while Just keep on keeping on. Also if you can think of a supplement that will help I will surely run it by my GI doc.Thanks again

 

[Wheatwacked]

Why do you want to put on weight?  

Quote

average BMI (body mass index, a weight-for-height formula used to measure obesity) has increased among adults from approximately 25 in 1960 to 28 in 2002....the average weight for men aged 20-74 years rose dramatically from 166.3 pounds in 1960 to 191 pounds in 2002.   https://www.cdc.gov/media/pressrel/r041027.htm

Quote

A more recent analysis of the Cancer Prevention Study cohort found that increased weight was tied to increased mortality from all cancers, and specific cancers;(7) in fact, study investigators estimate that overweight and obesity is responsible for 14 percent of all cancer deaths in women and 20 percent of all cancer deaths in men.   https://www.hsph.harvard.edu/nutritionsource/can-you-be-too-thin/

 

[Mark McGarrey]

1 hour ago, Wheatwacked said:

Why do you want to put on weight?  

 

Great question Wheatwacked. Never in my life did I ever think those words would come into my head. But I went from an unhealthy 200+ lbs to an unhealthy 153lbs. And it’s not so much to put on weight but that I CAN put on weight. I just began to workout and some of the saggy skin is starting to disappear but I’m still gaunt looking and have some anxiety that maybe there is something besides the celiac causing it. My blood work is still vitamin deficient but no indications of anything else going on. Thanks for the articles but I guess I’m trying to get my head as well as my body right. 

[Wheatwacked]

At 6'2" I was over 25 before I broke 155 lb. Peaked at 185, post GFD I dropped to 159 and am currently 168 although I felt better at 159. My list of daily vitamins: 500 B1 Thiamin, 1000 B12; B complex; B5 1000 mg; Phosphotidyl Choline 840 mg; Lithium 5 mg; Dhea 100 mg; vitamin C 1000 mg; Calcium 1000 mg; vitamin D3 250 mcg (10,000 IU); 15 ml Cod Liver Oil (vitamin A and omega 3); 3 sheets One Organic Nori (RDA iodine, the brand is certified free of heavy metals), 2 ounces almonds for RDA vitamin E.  When I started the nori my muscle tone improved even though I still don't exercise. Beans are good if you cook your own. Soak overnight, bring to a boil, simmer for an hour, store in airtight container. I target 4,700mg potassium a day (100% DV)

Edited February 14, 2022 by Wheatwacked
added thiamine

[Mark McGarrey]

Wow Wheatwacked looks like I’m going to have to build another cabinet for my vitamins. Extremely helpful! I have a Gi appt next month and I will run this by my doc when I see him. I will have blood work then to see where I’m deficient. One good thing is my knees which have always bothered me feel great. Actually I feel better at a  lighter weight. Thanks for responding it’s good to pick the brains of people who’ve been and continue to go through this process. 

[Wheatwacked]

24 linear inches in my kitchen junk drawer. 😀 Geritol Multivitamin for a single pill, but I avoid folic acid, synthetic vitamin E and vitamin A because some studies link them to cancers, and I smoke. Except for vitamin D my daily intake is well below the RDA upper limit. Even with 250 mcg/day vitamin D since 2015 my blood plasma is only 80 ng/ml. Adding the Thiamine recently lowered my comfortable ambient temperature from 78 Fahrenheit to 73 degrees. My daily intake had been 6 mg/day (500% RDA) but raising it to 500 a day made a difference. Coincidence or Placebo? I don't think so. "Only the Shadow knows"; and Knitty Kitty. My homocysteine is normal with the phosphatidyl choline, even though my whole family has vascular disease and hyperlipidemia. Triglycerides and cholesterol still high. Work in progress.

By the way a major commercial source of vitamin E supplement was WHEAT GERM. Don't know if that's still true.

Quote

A large trial reported in 1994 (pdf) that daily megadoses of the antioxidant beta-carotene increased the risk of lung cancer in male smokers by 18 percent and a 1996 trial was stopped early after researchers discovered that high-dose beta-carotene and retinol, another form of vitamin A, increased lung cancer risk by 28 percent in smokers and workers exposed to asbestos. More recently, a 2011 trial involving more than 35,500 men over 50 found that large doses of vitamin E increased the risk of prostate cancer by 17 percent.   https://www.scientificamerican.com/article/antioxidants-may-make-cancer-worse/#

Quote

Selenium and Vitamin E Cancer Prevention Trial.  Subsequent research based on the trial has generally found that selenium and vitamin E do not prevent prostate cancer. Other research based on foods rich in selenium or Vitamin E, not supplements, suggests that there is limited evidence such foods may protect against some forms of cancer.[3]   https://en.wikipedia.org/wiki/Selenium_and_Vitamin_E_Cancer_Prevention_Trial

 

[jtalbot1021]

On 2/13/2022 at 9:47 AM, Mark McGarrey said:

I was diagnosed with celiac in September of 2021. Mostly because of unwanted weight loss. 50 lbs. I have been gluten free since diagnosis. Is there anyone on here who has dealt with malabsorption and if so how long before you could start putting some weight back on?

How long? 2 years.

[Mark McGarrey]

Thanks for going to the trouble of schooling a newby to the disease Wheatwacked. But to be honest some of the terminology you use sounds like Charlie Browns teacher to me. My fault not yours. 

[Wheatwacked]

No, it is me. In my family I am forbidden to bring up the topic. Sorry.

[Scott Adams]

On 2/14/2022 at 2:37 PM, Wheatwacked said:

By the way a major commercial source of vitamin E supplement was WHEAT GERM. Don't know if that's still true.

I'm going by memory here, but I believe that even when it's made from wheat germ it would still be gluten-free, although I'd still recommend finding a wheat-free version even if this were true.

[jtalbot1021]

On 2/14/2022 at 7:29 AM, Mark McGarrey said:

Great question Wheatwacked. Never in my life did I ever think those words would come into my head. But I went from an unhealthy 200+ lbs to an unhealthy 153lbs. And it’s not so much to put on weight but that I CAN put on weight. I just began to workout and some of the saggy skin is starting to disappear but I’m still gaunt looking and have some anxiety that maybe there is something besides the celiac causing it. My blood work is still vitamin deficient but no indications of anything else going on. Thanks for the articles but I guess I’m trying to get my head as well as my body right. 

I am nearly 5'10" and weigh 130 pounds. Doc thinks I should gain weight. Isn't that just insane?

[M. Martha]

On 2/14/2022 at 8:29 AM, Mark McGarrey said:

Great question Wheatwacked. Never in my life did I ever think those words would come into my head. But I went from an unhealthy 200+ lbs to an unhealthy 153lbs. And it’s not so much to put on weight but that I CAN put on weight. I just began to workout and some of the saggy skin is starting to disappear but I’m still gaunt looking and have some anxiety that maybe there is something besides the celiac causing it. My blood work is still vitamin deficient but no indications of anything else going on. Thanks for the articles but I guess I’m trying to get my head as well as my body right. 

I hear you on this one. What I had to do was change the paradigm in my head from “putting on weight” to “being healthy.” My effort to put on weight with gluten free products exacerbated SIBO (small intestinal bacterial overgrowth) that I had just treated. Didn’t rile it up enough to show on a test so I went another 3 years before I realized when I cut out all of my supplements (during COVID 7/2020 to see if the burning in my esophagus would go away) that I had been doing a good job with the supplements of controlling IBS (irritable bowel syndrome) and indeed the SIBO was back. Did another treatment with xifaxin (this time the GI doctor did not require a test) and I have been clear since. 

There are a couple of lessons here that could be helpful. First, no matter how traumatic the health challenges are, in my case - recurrent clostridium difficile requiring an FMT (fecal microbiota transplant) to resolve, SIBO, celiac, COVID disregulation of gut bacteria, esophageal burning and bloating, neurological/psychological symptoms from leaky gut (intestinal permeability) and weight loss when I was never overweight, it’s all a gift. Why? Because I have discovered in this process the key to health - a healthy gut - and at times have never felt better in my life - no inflammation, energy, brain restored, mood elevated, Hashimoto’s thyroiditis reversed. I’m 69. 

The simple guide to a healthy gut is reduce toxins (glyphosate, sources of mercury etc), eliminate triggers (for me it was gluten, casein from dairy, nightshades, all grains, sugar (still eat fruit, honey and occasionally maple syrup), and processed foods). Get your nutrients from whole foods - foods your body will recognize as food - shop around the periphery of the grocery store: grassfed meat, organ meat (liver, etc filled with necessary vitamins), pastured eggs, organic vegetables when possible, fruit. Homemade chicken soup - per Jordan Rubin (he did not go gluten free but he did reverse Crohns - inspiring story) and Mary Ruddick who re-inspired me a year ago - has done a lot to heal my gut - chew on the bones for calcium. Could also make bone broth. Fermented foods as recommended by Dr. Natasha Campbell-McBride, MD (GAPS protocol), specifically sauerkraut was a game changer. If you eat almonds and I have, soak and remove the skins, dehydrate. Healthy fats - no processed vegetable oils per Dr. Paul Saladino, MD who does a deep dive into this on his podcast. Dr. Terry Wahls, MD who reversed MS with her protocol (check out the TED talk) and is now conducting randomized placebo controlled trials on it at the Univ of Iowa where she’s a professor, has also inspired and helped me with her advice. Dr. Diana Schwartzbein, MD, an endocrinologist who was reversing Type 2 diabetes in her patients with diet was the first one to give me insights. Dr. Tom O’Bryan held a great seminar on Celiac disease early on which was very informative. Dr. Mark Hymen, MD, head of the functional medicine department at Cleveland Clinic, has also been helpful. 

I have gradually added supplements - food was the game changer, but I do take Numedica colostrum, Garden of life Primal defense ultra probiotic, Jarrows Formula Saccharomyces boulardii, vitamin C, vitamin D3 5000 IU, magnesium, b complex, vitamin E (NOW brand made from sunflower oil per Isabella Wentz, PhD, the thyroid pharmacist, author of Hashimoto’s Protocol), selenium, zinc - helped with malabsorption from clostridium difficile and FMT, and lutein/zeaxanthin for eye health, also Garden of life Icelandic cod liver oil though since I started eating liver regularly, I’ve slacked on this. 

It really does sound like you are working on the right mindset - your knees are feeling better and that’s just a sign of the good things to come - but losing that much weight so quickly can be tough. Just forget about the weight issue now and seek optimal health. It’s an exciting time to be doing this because there is so much research and information out there. And there are many people who can support you on your journey, not only here but others who have reversed their autoimmune disease symptoms and are experiencing robust health. Be blessed and be well, Mark. I feel certain this is just the beginning of good things to come. 

[Mark McGarrey]

1 hour ago, M. Martha said:

I hear you on this one. What I had to do was change the paradigm in my head from “putting on weight” to “being healthy.” My effort to put on weight with gluten free products exacerbated SIBO (small intestinal bacterial overgrowth) that I had just treated. Didn’t rile it up enough to show on a test so I went another 3 years before I realized when I cut out all of my supplements (during COVID 7/2020 to see if the burning in my esophagus would go away) that I had been doing a good job with the supplements of controlling IBS (irritable bowel syndrome) and indeed the SIBO was back. Did another treatment with xifaxin (this time the GI doctor did not require a test) and I have been clear since. 

There are a couple of lessons here that could be helpful. First, no matter how traumatic the health challenges are, in my case - recurrent clostridium difficile requiring an FMT (fecal microbiota transplant) to resolve, SIBO, celiac, COVID disregulation of gut bacteria, esophageal burning and bloating, neurological/psychological symptoms from leaky gut (intestinal permeability) and weight loss when I was never overweight, it’s all a gift. Why? Because I have discovered in this process the key to health - a healthy gut - and at times have never felt better in my life - no inflammation, energy, brain restored, mood elevated, Hashimoto’s thyroiditis reversed. I’m 69. 

The simple guide to a healthy gut is reduce toxins (glyphosate, sources of mercury etc), eliminate triggers (for me it was gluten, casein from dairy, nightshades, all grains, sugar (still eat fruit, honey and occasionally maple syrup), and processed foods). Get your nutrients from whole foods - foods your body will recognize as food - shop around the periphery of the grocery store: grassfed meat, organ meat (liver, etc filled with necessary vitamins), pastured eggs, organic vegetables when possible, fruit. Homemade chicken soup - per Jordan Rubin (he did not go gluten free but he did reverse Crohns - inspiring story) and Mary Ruddick who re-inspired me a year ago - has done a lot to heal my gut - chew on the bones for calcium. Could also make bone broth. Fermented foods as recommended by Dr. Natasha Campbell-McBride, MD (GAPS protocol), specifically sauerkraut was a game changer. If you eat almonds and I have, soak and remove the skins, dehydrate. Healthy fats - no processed vegetable oils per Dr. Paul Saladino, MD who does a deep dive into this on his podcast. Dr. Terry Wahls, MD who reversed MS with her protocol (check out the TED talk) and is now conducting randomized placebo controlled trials on it at the Univ of Iowa where she’s a professor, has also inspired and helped me with her advice. Dr. Diana Schwartzbein, MD, an endocrinologist who was reversing Type 2 diabetes in her patients with diet was the first one to give me insights. Dr. Tom O’Bryan held a great seminar on Celiac disease early on which was very informative. Dr. Mark Hymen, MD, head of the functional medicine department at Cleveland Clinic, has also been helpful. 

I have gradually added supplements - food was the game changer, but I do take Numedica colostrum, Garden of life Primal defense ultra probiotic, Jarrows Formula Saccharomyces boulardii, vitamin C, vitamin D3 5000 IU, magnesium, b complex, vitamin E (NOW brand made from sunflower oil per Isabella Wentz, PhD, the thyroid pharmacist, author of Hashimoto’s Protocol), selenium, zinc - helped with malabsorption from clostridium difficile and FMT, and lutein/zeaxanthin for eye health, also Garden of life Icelandic cod liver oil though since I started eating liver regularly, I’ve slacked on this. 

It really does sound like you are working on the right mindset - your knees are feeling better and that’s just a sign of the good things to come - but losing that much weight so quickly can be tough. Just forget about the weight issue now and seek optimal health. It’s an exciting time to be doing this because there is so much research and information out there. And there are many people who can support you on your journey, not only here but others who have reversed their autoimmune disease symptoms and are experiencing robust health. Be blessed and be well, Mark. I feel certain this is just the beginning of good things to come. 

Thanks M.Martha. That helps. 

[M. Martha]

2 minutes ago, Mark McGarrey said:

Thanks M.Martha. That helps. 

 

2 minutes ago, Mark McGarrey said:

Thanks M.Martha. That helps. 

Glad that was helpful. I stepped away and remembered MSM - I take one small scoop of that in powdered form in water (Jarrows Formulas). Noticed it helped when they took it out of a glucosamine chondroitin MSM supplement I was taking. Don’t take that anymore, just the MSM. Also, it’s Dr. Mark Hyman (corrected spelling) and then the other doctor I wanted to mention is Dr. Alessio Fasano, MD who’s done a lot of research into celiac disease specifically. I’ve also enjoyed Ari Whitten’s dive into the mitochondria - science based - encouraged me to get out in the sun (15-20 min on a side) - notice the difference. Also Epsom salt baths. Be good to yourself, Mark....it’s a process....🙂🙏

[Emiandgabesmom]

For me it has been extremely rough trying to gain weight and i tested myself for celiac due to the sheer terror from the idea that I would actually have to eat gluten for a diagnosis. For a while I would avoid gluten and then would have an urge to eat something I had been able to eat in the past, which of course would only end in horrific suffering and remind me that gluten makes very ill now. I kept hoping maybe something else had caused the issue that had me so sick for a year and had gotten so bad that I was vomiting after drinking water and could hold nothing down. I feel that the length of time that passed without realizing the culprit, and the following several events where I convinced myself gluten was safe is why it has been about a year and a half of being unable to gain weight. It is scary when you start to look like a skeleton with skin basically and the doctors offer no knowledge and want you to poison yourself when your body is already so depleted. The positive part is that I do believe by body is finally starting to absorb again, just barely, but more time has to go by to really tell. So, the weight gain might take a while, but as long as you don't second guess the gluten being the issue, I'm sure it won't drag on as long as it has for me. 

[Mark McGarrey]

1 hour ago, Emiandgabesmom said:

For me it has been extremely rough trying to gain weight and i tested myself for celiac due to the sheer terror from the idea that I would actually have to eat gluten for a diagnosis. For a while I would avoid gluten and then would have an urge to eat something I had been able to eat in the past, which of course would only end in horrific suffering and remind me that gluten makes very ill now. I kept hoping maybe something else had caused the issue that had me so sick for a year and had gotten so bad that I was vomiting after drinking water and could hold nothing down. I feel that the length of time that passed without realizing the culprit, and the following several events where I convinced myself gluten was safe is why it has been about a year and a half of being unable to gain weight. It is scary when you start to look like a skeleton with skin basically and the doctors offer no knowledge and want you to poison yourself when your body is already so depleted. The positive part is that I do believe by body is finally starting to absorb again, just barely, but more time has to go by to really tell. So, the weight gain might take a while, but as long as you don't second guess the gluten being the issue, I'm sure it won't drag on as long as it has for me. 

Emiandgbesmom. I know how scary it is. I still kind of shy away from mirrors. But like so many people have said on this sight I will keep plugging  away at it. Thank you for replying to my post.