Study Shows Worrisome Gut Changes in Seemingly Healthy Gluten-Free Celiac Patients

@LydiaMay, Thanks for posting! 

More so with a gluten free diet, and even with a "healthy choice" diet, we are susceptible to numerous vitamin and mineral deficiencies that testing will not reveal. We assume that because we are aware, we are not deficient. It took more than six months of making sure that every day I ate more than 4700 grams of potassium, the current RDI used on food labels, (supplementation of potassium is not a healthy option), and now my decades long high blood pressure has dropped to an average 129/75 for the past two weeks. That's better than 20 mmHg systolic for me.  Medications weren't helping and the side effects were unacceptable to me. I also discovered sixteen other vitamins and minerals often lacking in my diet, that I supplement daily in order to not be deficient, based on the NIH, Office of Dietary Supplements RDA's. My burning cold feet (when trying to sleep) are at sunburn level now, and I no longer turn the heat on at 78 degrees. 

On 10/6/2020 at 12:54 PM, Guest Sam said:

Hello, I have been searching the internet trying to figure out what is wrong with me. I was diagnosed with celiac disease at 2 years old after lots of testing. I am 19 years old and have been on a strict gluten free diet for the last 17 years. However, during the past 4-5 years I have had increasingly worse symptoms(symptoms of celiac) while following the diet. My cousin(17 years old) has the exact same symptoms as me and is also following a gluten free diet. I am trying to figure this out before too much long term damage is done. The fact that this is a recent study without any foreseeable solutions is worrisome. 

In addition to checking with your doctor, take a look at FODMAPs.  Adverse reactions to FODMAPs can mirror celiac disease, and may be concurrent with celiac disease. Check our article, 
Can Low FODMAP Diet App Help Some Celiac and IBS Patients? It's pretty easy to do an elimination diet with FODMAPs and see if they might be the culprit.

From the time I was diagnosed as a failure to thrive baby until I was diagnosed with Celiac in my 50's I can't remember a day that I can say I truly felt good. I am in my 60's now and am vigilant in my pursuit of remaining gluten free, but daily suffer from a host of autoimmune diseases and the damage of malabsorption and vitamin deficiencies. I have tried a few elimination/low Fodmap diets and have lost a lot of weight on them, but with no avail in regaining my health. This report doesn't scare me, it just confirms what I have known since my official diagnosis- I will probably never be truly healed. Overall my life has been a very good one, however I can only imagine how much better it would have been if studies like this had been done long before now. I appreciate the work of the scientists conducting this research and hope their work will one day bring a greater understanding of and healing to those of us affected.   

On 10/26/2020 at 11:58 PM, Guest Debi said:

From the time I was diagnosed as a failure to thrive baby until I was diagnosed with Celiac in my 50's I can't remember a day that I can say I truly felt good. I am in my 60's now and am vigilant in my pursuit of remaining gluten free, but daily suffer from a host of autoimmune diseases and the damage of malabsorption and vitamin deficiencies. I have tried a few elimination/low Fodmap diets and have lost a lot of weight on them, but with no avail in regaining my health. This report doesn't scare me, it just confirms what I have known since my official diagnosis- I will probably never be truly healed. Overall my life has been a very good one, however I can only imagine how much better it would have been if studies like this had been done long before now. I appreciate the work of the scientists conducting this research and hope their work will one day bring a greater understanding of and healing to those of us affected.   

Debi, We are Kindred Spirits. Here is the list of supplements I am taking every morning for the past six months. I added them, one by one over time. It's a pain but i got sick and tired and it's working for me. My PCP is aware and did not throw any red flags, though it is not a recommendation. I strive to get 5000 grams (RDI = 4700mg) of Potassium everyday in my food and my average systolic BP, since Feb., is down about 20mgHg. BP meds side effects were unacceptable to me. Because it is so well controlled by our bodies it is a long slow process to raise cellular potassium levels. In contrast, I felt the initial effects of most of the vitamins in less than a week. I avoid synthetic vitamin E, A, and Folic acid because of potential cancer risks, but get them through foods. Unfortunately, there are no simple tests to quantify cellular status, but by using the Nutrition Database in a spreadsheet, I was able to identify the nutrients I was consistently near or below minimum meets expectation.  Hope it is helpful to you. Paul

On 10/28/2020 at 4:07 PM, Wheatwacked said:

Debi, We are Kindred Spirits. Here is the list of supplements I am taking every morning for the past six months. I added them, one by one over time. It's a pain but i got sick and tired and it's working for me. My PCP is aware and did not throw any red flags, though it is not a recommendation. I strive to get 5000 grams (RDI = 4700mg) of Potassium everyday in my food and my average systolic BP, since Feb., is down about 20mgHg. BP meds side effects were unacceptable to me. Because it is so well controlled by our bodies it is a long slow process to raise cellular potassium levels. In contrast, I felt the initial effects of most of the vitamins in less than a week. I avoid synthetic vitamin E, A, and Folic acid because of potential cancer risks, but get them through foods. Unfortunately, there are no simple tests to quantify cellular status, but by using the Nutrition Database in a spreadsheet, I was able to identify the nutrients I was consistently near or below minimum meets expectation.  Hope it is helpful to you. Paul

Wheatwacked- We are kindred spirits. Here is my daily routine:

Supplements:

Nutrient 950 w/o Iron                             Multi-Vit                            3/dy                        Calcium w/D3                                        600 mg                             2/dy  

Vitamin B12                                          5000 mcg                         1/dy                       Zinc 30                                                 30 mg                               1/dy

L-Glutamine                                          500mg                              1/dy                      Arginine & Citrulline                               500mg/250mg                   1/dy

Natural Calm Magnesium                       350 mg                             1/dy                   Ultimate Omega 3                                 1280 mg                           2/dy

Vitamin C                                              500 mg                             2/dy                    Tumeric Curcumin Complex                   500mg                              1/dy

Glucosamine 1500mg/  Chondroitin 200mg/  MSM 750mg               2/dy                Tylenol                                                  500mg                              As needed for pain

In addition my lifesaver has been Low Dose Naltrexone and Nature Thyroid. Without them I wouldn't even be able to get out of bed. I also eat as healthy as I can. The struggle is real, but the benefits are worth it.

Iodine: muscle tone , thyroid function and apoptosis (killing off defective cells). When we were kids, we got iodine from bread and milk. those days are gone, Milk is still a good source.

choline: (Adequate Intake: 550). Eggs were a good source. "Choline deficiency can cause muscle damage, liver damage, and nonalcoholic fatty liver disease...In adults, the average daily choline intake from foods and beverages is 402 mg in men and 278 mg in women. Intakes from supplements contribute a very small amount to total choline intakes."Open Original Shared Link

DHEA: precursor to male and female hormones. By age 70 DHEA production is less than 20% that of a 20 year old. Open Original Shared Link

Potassium:  People at risk of high blood pressure, kidney stones, osteoporosis or stroke may benefit from consuming at least 4,700 mg of potassium per day.Open Original Shared Link  In adults aged 20 and over, the average daily potassium intake from foods is 3,016 mg for men and 2,320 mg for women.Open Original Shared Link