22235 Celiac Crisis: A Rare but Serious Complication of Celiac Disease in Adults - Celiac.com
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Celiac Crisis: A Rare but Serious Complication of Celiac Disease in Adults


Clinical Gastroenterology and Hepatology research on celiac crisis

Celiac.com 08/02/2010 - Celiac crisis is a rare, poorly understood, but potentially deadly condition in which patients with celiac disease suffer from severe diarrhea and other serious metabolic changes.

Celiac crisis is specifically defined as acute onset or rapid progression of gastrointestinal symptoms, together with signs or symptoms of dehydration or malnutrition that may be attributed to celiac disease, and which require hospitalization and/or supplemental nutrition.

In an effort better understand celiac crisis, and to improve diagnosis techniques for the condition, a team of researchers reviewed cases of celiac crisis to identify presenting features, formulate diagnostic criteria, and develop treatment strategies.

The research team included Shailaja Jamma, Alberto Rubio-Tapia, Ciaran P.  Kelly, Joseph Murray, Robert Najarian, Sunil Sheth, Detlef Schuppan, Melinda Dennis, and Daniel A. Leffler. They are affiliated variously with the Celiac Center of the Beth Israel Deaconess Medical Center at Harvard Medical School, and with the Mayo Clinic.

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The team reviewed cases of biopsy-proven celiac disease, specifically defined as acute onset or rapid progression of gastrointestinal symptoms, together with signs or symptoms of dehydration or malnutrition that may be attributed to celiac disease, and which require hospitalization and/or parenteral nutrition.

The team found twelve patients who met preset criteria for celiac crisis; eleven patients who developed celiac crisis before being diagnosed with celiac disease; eleven patients with increased titres of transglutaminase antibodies; and one patient with low levels of immunoglobulin A. Duodenal biopsy samples for all patients were consistent with a Marsh 3 score; 33% showed total villous atrophy.

All patients showed signs or symptoms of severe dehydration, renal dysfunction, and electrolyte disturbances. All patients required hospitalization and intravenous fluids, six patients required corticosteroids, and five required parenteral nutrition. All patients showed positive response to treatment with a gluten-free diet.

Even though celiac crisis is a rare condition that strikes adults, it is nonetheless serious and carries a high risk of death. In most cases, patients with the condition present clear signs and symptoms, such as severe unexplained diarrhea and malabsorption. Doctors should test such patients for celiac disease, and consider treatment with systemic steroids or oral budesonide, in addition to providing short-term nutritional support until the patients respond fully to a gluten-free diet.

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13 Responses:

 
Rosemary
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said this on
06 Aug 2010 7:03:53 AM PDT
Good information for sufferers.

 
brian blair
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said this on
06 Aug 2010 10:35:55 AM PDT
That describes exactly what happened to me, sans the parenteral nutrition.

No mention was ever made of Celiac crisis, just the fact that I had celiac disease. A few days in the hospital, the endoscopy and diagnosis, then on with the new way of life.

 
C. Brown
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said this on
06 Aug 2010 10:54:18 AM PDT
That's what happened to me. That is why I was finally was diagnosed. I was told by one of the moderators that I greatly exaggerated my symptoms. Thanks a lot for the support....

 
Pamela
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said this on
10 Aug 2010 6:19:52 AM PDT
I starting getting stomach aches & diarrhea after every meal at the age of 12, never went far from a bathroom, hospitalized and diagnosed with everything but celiac (dairy problem, not). Fiinally at the age of 52 my sister-in-law got sick with the same symptoms and was diagnosed with celiac. I went off of gluten myself, gained 20 pounds (I was really thin) and haven't had a stomach ache or diarrhea since, I work in the health-care field and saw every gastro doctor in Philly, I thought I was dying, shame on them!

 
Julie
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said this on
10 Aug 2010 9:58:14 AM PDT
I never had the diarrhea problem...but I have severe fluctuations with my blood pressure and heart rate.
I have gone off celiac for my nausea and general stomach upset that doesn't result in diarrhea but sometimes loose bowels and then constipation. I do feel much better but haven't heard a connection with blood pressure and heart rate issues...just wondering.

 
Peggy
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said this on
10 Aug 2010 8:15:53 PM PDT
I do also suffer with heart palpitations as soon as I eat something with gluten. I can tell you by my heart reaction that I know almost immediately I have ingested gluten and as I start reading labels, always find the cause. Does not happen as often now that I have a better handle on foods containing gluten. I will say that the heart response had started to become quite severe before I realized what was causing it including heavy chest and pain. Apparently people who have the heart involved are true allergy responses and not just a sensitivity. Hope this helps!

 
Jennifer
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said this on
16 Aug 2010 10:50:25 AM PDT
I had issues with very low blood pressure and occasional racing heart. Saw a heart specialist who thought I should be on beta blockers. Glad I didn't listen. Finally diagnosed with celiac 9 years later!

 
Meschelle
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said this on
10 Aug 2010 10:46:42 AM PDT
Same thing happened to me prior to my diagnosis...my doctors didn't have a clue what was wrong for months...even the gastroenterologist I was referred to failed to make the diagnosis. By the time I was finally diagnosed, I had lost 70 lbs and was unable to digest any food. Sadly, many doctors have very little knowledge about Celiac disease. I suffered needlessly for about a year.

 
Sally Dellas
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said this on
10 Aug 2010 2:35:32 PM PDT
I've had bouts of diarrhea off and on for ages. Been treated for IBS since 1990. I believe I had a celiac crisis around 1997 when I had to go into the ER for rehydration due to a long episode of diarrhea. The doctors talked about "dumping syndrome" --everything was going through me in minutes. But nobody even thought of gluten. In 2002 I believe I had another when I was up all night, with diarrhea every 20 minutes on two occasions a few days apart. I'd eaten spaghetti and garlic bread the first time and the leftovers the next, but didn't make the connection. I finally diagnosed myself a couple of months later, after seeing a nutritionist who mentioned wheat or gluten allergies. Duh--my daughter was diagnosed with celiac in 1959. Never knew adults could get it.

 
MATTMD
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said this on
13 Aug 2010 10:38:31 AM PDT
This is a great read, four years ago I suffered from coeliac crisis, upon going to hospital I was told it was food poisoning, the more attacks over the next 8 months and I decided to go to my doctor and demand a test for coeliac, he refused and told me I most probably had Gilberts Syndrome, a totally unrelated disorder. in the end after dozens of other tests over the course of three years I was forced to take matters into my own hands, switching my diet following the Gluten Free plan and I have been fine since.

 
Marsha
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said this on
20 Aug 2010 8:55:50 PM PDT
The racing heart thing was one I did not know about but remember it happening many times before my diagnosis. Since diagnosis and going gluten free, I seldom have the palpitations anymore.

 
Louise
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said this on
18 Jun 2012 5:15:31 PM PDT
34 years of people thinking I was crazy. Let's hope this gluten-free plan will heal me up.

 
Shelly
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said this on
12 Oct 2012 4:25:08 AM PDT
After reading this, it answers the question of my father's cause of death in Nov 2007. He was in a nursing home and went from 165 lbs in July to barely over 100 lbs at this death. He could not tolerate food at all and we literally watched him starve to death. One week before he passed, the doctors offered a feeding tube, but not knowing he had celiac, he and we declined. I found out 2 years later that my father was diagnosed with celiac sprue via biopsy just 1 month before he passed. What a shame that we didn't know and just eating right would have saved him from years of misery.




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I prefer edible candy. I have glaucoma and celiac so it helps me on a daily basis for all of my medical problems. I wish I could find a strain that has laxative effects so I didn't need linsess. Leafly.com has a lot of strain information and cannabist is a good resource, too. You can use CBD or THC and not get 'stoned'. I function fine on 20 mg of the candy. I refuse to drive if I smoke though. Good luck, hope it helps.

Is it NCGS or Low stomach acid misdiagnosed Low Stomach Acid and Celiac Disease Dear Gluten Intolerant please consider Low Stomach Acid as a possible Differential Diagnosis as a possible way to achieve remission of your GI symptom's. ?Consider what I say; and the Lord give thee understanding in all things? 2 Timothy 2: 7 Low stomach acid has now been linked to a probable cause of damage to the Small Intestine before and/or occurring with a Non-Celiac Gluten Sensitivity (NCGS) or Celiac diagnosis. See this research as reported on celiac.com that discusses the increased risk of/for someone to develop celiac disease after taking PPI?s. http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html Note how the article starts quoting ?Rates of celiac disease and the use of drugs to inhibit the secretion of stomach acid have both increased in recent decades. A research team recently set out to explore the association between anti-secretory medication exposure and subsequent development of celiac disease.? If these medicine are lowering stomach acid what cause effect relationship does/ could this have on Celaic/NCGS diagnosis is what he is postulating. He goes on to say without being very technical (read the whole article for yourself) that ?The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines. The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship?. If even after a year OFF these medicines your chances of developing Celiac Disease (celiac disease) not to mention even NCGS which is much more prominent surely the researcher is correct in postulating that there is a cause and effect relationship between low stomach acid and NCGS and/or Celiac disease. Surely there is something we can learn here. I now postulate some homework for the reader of this blog post. Do some research for yourself and see if achlorhydia or hypochlorhydia symptoms don?t at least resemble in some manner all of the GI symptoms you have been having. (I note some of the many symptom?s low stomach acid can present with below as referenced from Dr. Myatt?s online article ?What?s Burning You? for easy reference (It might not be what you think (my words)) It is important to note here that ?some? symptoms does not mean all but many or several. It is called a differential diagnosis. It is an important diagnostic tool in medicine. Think of the tv show ?House? where they spend the whole hour/over a week times going through the ?differential diagnosis? in short any one symptom can/have many different causes. The trick is how to quickly eliminate possible outcomes as symptoms (many) go up. All is usually never meet because that would make the disease in full outbreak and obvious even to the layman a condition described as ?frank? or ?classic? Scurvy or Rickets as an example. Sadly too often after 8 to 10+ years of testing after all the differential diagnosis?s are ruled out you are said by process of elimination to have Celiac Disease if you are lucky or maybe NCGS and not some other acronym GI disease as I like to refer to them as a group. GERD,IBS,UC, Chrons etc because if they turned down that street ? . you are/could be in/at a dead end for they stop looking at the trigger (gluten) as the cause of your gastric upset/digestive disorder(s). So in summary if 3 or 4 or 5 or 6 of these symptoms overlap ?many of? these symptoms could be Low Stomach Acid related. IF that is the cause/case for you then there is hope! For remission! From Dr. Myatts? Online article what?s burning you? From Dr. Myatts? Online article what?s burning you? http://healthbeatnews.com/whats-burning-you/ Diseases Associated with Low Gastric Function Low stomach acid is associated with the following conditions: * Acne rosacea * Addison?s disease * Allergic reactions * Candidiasis (chronic) * Cardiac arrhythmias * Celiac disease * Childhood asthma * Chronic autoimmune hepatitis * Chronic cough * Dermatitis herpeteformis * Diabetes (type I) * Eczema * Gallbladder disease * GERD * Graves disease (hyperthyroid) * Iron deficiency anemia * Laryngitis (chronic) * Lupus erythromatosis * Macular degeneration * Multiple sclerosis * Muscle Cramps * Myasthenia gravis * Mycobacterium avium complex (MAC) * Osteoporosis * Pernicious anemia * Polymyalgia rheumatica * Reynaud?s syndrome * Rheumatoid arthritis * Scleroderma * Sjogren?s syndrome * Stomach cancer * Ulcerative colitis * Vitiligo When low in stomach acid we become low in essential nutrients Quoting from Dr. Myatts ?what?s burning you? online article ?Our bodies need 60 or so essential nutrients. ?Essential? means that the body MUST have this nutrient or death will eventually ensue, and the nutrient must be obtained from diet because the body cannot manufacture it. Many of these essential nutrients require stomach acid for their assimilation. When stomach acid production declines, nutrient deficiencies begin. Calcium, for example, requires vigorous stomach acid in order to be assimilated. Interestingly, the rate of hip replacement surgery is much higher in people who routinely use antacids and acid-blocking drugs. We know that people who have ?acid stomach? were already having trouble assimilating calcium from food and nutritional supplements due to lack of normal stomach acid production. When these symptoms are ?band-aided? with drugs which decrease stomach acid even more, calcium assimilation can come to a near-halt. The result? Weak bones, hip fractures and joint complaints resulting in major surgery. Jonathan Wright, M.D., well-known and respected holistic physician, states that ?Although research in this area is entirely inadequate, its been my linical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal. When we test plasma amino acid levels for those with poor stomach function, we frequently find lower than usual levels of one or more of the eight essential amino acids: isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. Often there are functional insufficiencies of folic acid and/or vitamin B12.? Remember, these are essential nutrients. Deficiencies of any single one of them can cause serious health problems over time. Weak bones, diminish immune function, failing memory, loss of eyesight and many other ?diseases of aging? are often the result of decreased stomach function.? It is me again reader. So low stomach acid is the triggering agent (often) for low nutrients. Make too much sense! Now don?t take Vitamin?s for this condition where low Vitamins/Minerals are known to be low in patients who have this condition because . . . . (if you do you won?t need to keep coming back to the doctor) I can almost hear the doctor say now. Of course he/she doesn?t say that . . . just that the ?average person? doesn?t need to take Vitamins. Well I hate to break it too you . . . . but if you are having GI problems and reading this blog post on celac.com then you are not the ?average? person. You my friend or a sufferer or a friend of a sufferer still looking for answers. If that is you then consider taking either powdered stomach acid ? Betaine HCL or taking Niacinamide to help you reset your stress clock. A Canadian researcher wrote about this connection 15+ years ago but still most doctors? don?t understand this connection between about how ?Niacin treats digestive Problems? Here is the full link so you can research it more yourself. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml And you might not after a first reading. I didn?t believe it myself for over a year . . . but every time I thought about it ? it (Low Stomach Acid) made/makes the most sense to me. **** Note: research this yourself. Here is a link about how to take Betaine HCL (powdered stomach) for maximum effectiveness. http://20somethingallergies.com/how-much-hcl-do-i-take-learn-to-test-for-your-correct-dose/ Don?t take my blog post as medical advice. It is only what I did . . . it might not work for you but I think it is worth a try especially if you are not now taking an acid reducer. (see notes below about why this might) be more difficult if you are already taking an acid reducer . . . because the rebound wall (see chris kresser link) keeps us locked in . . . sometimes for years. Since I was not taking acid reducers at the time I took Betaine HCL my stomach problems improved and I am sharing this now in the hopes it might help yours too! Now back to (really) LOW stomach acid being diagnosed as HIGH stomach acid these days. How can we know if it truly high or low? You?ve heard the phrase timing is everything well it is here too! Timeline is important in any diagnosis. IF your stomach acid was HIGH as you often hear (everywhere) you hear take a Proton Pump Inhibitor aka acid reducer?s for heartburn/GERD (medical name for heartburn) then eating food (carbs, greasy things) wouldn?t bother you. The acid would cut it up but if it is already low/weak then even a little acid can burn your esophagus which is not coated like the stomach to protect you from high acid. BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight your in and things (carbs/fats) become to ferment, rancidify and cause heart burn. Leading in time to Non-Celiac disease first and with enough injury (and time) to Marsh lesions qualifying you for diagnosis as a Celiac candidate / patient. See above link between/about PPI?s in the year preceding a Celiac diagnosis. If you (can) be that patient and weight the xx number of years for all this damage to occur, there is a better way it is called digestion! A virtuous cycle can replace the vicious cycle you are now in ? it is caused digestion. Digest your food with healthy stomach acid and your body will thank you for it with the God given burp. A healthy child burps (at 6 months of age normally) and a healthy adult should too and you will again after taken Niacinamide 3/day for 6 months or this is not the right diagnosis. *********Note this is not medical advice only my experience with Niacinamide and my many years researching this topic as a fellow sufferer. Let me make these disclaimer(s). If you are a) experiencing heartburn that causing vomiting (with unintended weight loss) you may have a special case of heartburn that feels like heartburn (on steroids) that is really Bile Reflux and taking Stomach is not something you should do without medical advice and supervision. See this NYtimes article that discusses the many complications often seen with Bile Reflux patients and why it is treated as Heartburn often and why Bile Reflux is especially hard to recover from. http://www.nytimes.com/2009/06/30/health/30brod.html you are already taking an acid reducer then the chance you will get better (off of acid reducers completely) is only 50/50 on your first try but going low CARB can help your transition. Otherwise most people will get better when taking BetaineHCL for gastric support and Niacinamide to help them/you reset your digestive processes. See this online article about how Jo Lynne Shane got off Nexium for good. http://www.jolynneshane.com/how-i-got-off-nexium-for-good.html and her Epilogue http://www.jolynneshane.com/epilogue.html You will see she still struggles some but is much better when she let her natural digestive juices do their job. I call it the ?Natural Order of Things?. See this article about the digestion process being a North South Affair from the bodywisdom website http://bodywisdomnutrition.com/digestion-a-north-to-south-process/ Taking it (Niacinamide) (or any B-Vitamin) should be taken 2 to 3/day (too keep up serum levels) for 3 to 4 months (the time you can store B-Vitamins) in the liver mostly. Once you have a distinctive BURP that displaces the bloating and sense of ?I am going to explode? if I eat another bite (though you haven?t eaten half your meal) then normal digestion is occurring again. If you stool did not sink before this process (of taking Niacinamide begun) and burping became your ?new normal? then it (your stool) will begin to sink too! Burping without bloating is the ?Natural Order? of good digestion. Don?t stop this process of taking B-Vitamins as Niacimaide or Slo-Niacin 2/day for at least 4 months then you should see most of your GI symptom?s go into remission. (I did not say "cure" but remission from your cross contamination's (flares/symptom's etc.) might be possible. Because our defenses are now strong enough to cut up proteins before they reach our small intestine (where most of the damage is done). Think of a castle with a moat around it (stomach acid is designed to protect us) when it is low (the moat doesn?t protect us) and when the moat is dry the castle becomes a ruin!!! So do proteins (lactose (casein), gluten, soy, seafood etc.) to our small intestines (they become ruined) when our stomach acid (moat) is low or worse dry! I repeat again Timeline is important in any diagnosis. All heartburn is not equal. IF your stomach acid is truly high then it WILL occur between meals when there is no food to tamp down the fire (occurring in your stomach) not your esophagus. The excess pressure from fermented carbs push open the trap door allowing the low acid you have to burn the lining of your uncoated esophagus. See also this online article by Chris Kresser to study this more about why/how this could be a case of medical misdiagnosis in more detail https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ This is part of a 3 part series that I think you will find very informative. This (low stomach acid) is a vicious cycle. STRONG stomach acid makes it a virtuous circle/cycle. Now food benefits you because low acid not only causes heartburn it limits your body?s absorptive ability by limiting its ability to cut up your food into digestible peptides and amino acids which are no longer harmful to your Small Intestine but helpful to your overall health because nutrients can now be absorbed because the food particles are now small enough to not cause harm to your villi. I hope this is helpful and it helps you the way it helped me. Maybe it will help you in a similar manner. I write this only as a guidepost on your way. May you find your way back to digestive peace! The ?Natural Order? of things! Praise bee to God! It is not a long way if you know the way . . . . from someone who has found his way back God being his help! There are more things I could say . . . but this post is getting kind of long but you get the gest. I noticed someone else on the celiac.com noticed the same improvement when they treated their low stomach acid and thought it was time a blog post talked about it. It is so much easier to consume all this information in one setting instead of hunting and peeking through several thread posts. Search for the posterboy on celiac.com and you will find it is my focus (how low stomach acid is misdiagnosed) and how Niacinamide helped me to restore its ?Natural Order? in the digestive process because it helped me! Here is the link to the Prousky?s abstract. 15+ years is a long time for people to continue to suffer but if the research it right then Niacinamide might help you too! http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm Let?s hope it is not another 15 years before doctor?s and people realize low stomach acid can explain many of the same symptom?s an IBS, NCGS or even a Celiac patient might experience given a long enough time for these conditions to develop from too low a stomach acid to protect our Small Intestine. See link at start of this blog post posted here again for convenience. http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html And it is worth noting about the time Celiac disease started (began to be more prevalent) / to increase in the population Acid reducer?s became more and more popular. *** Some plot the increase in time to Roundup usage but I am not buying it. PPI?s increase seam more plausible to me based on the relatively new research (less than 5 years old) is pretty current by research standards and the near linear response to increased first H2 stomach acid reducer?s then PPI?s in the population at large. *****Note: after I finished writing this blog post new research that in my mind confirms this connection was reported on celiac.com today that notes the link between gastric pH and impaired nutrient absorption. This very topic as I was getting ready to publish my post about low stomach acid possibly being diagnosed as Celiac disease on my posterboy blog mentions how a Celiac patient?s absorption can be impaired by gastric pH. https://www.celiac.com/articles/24738/1/Can-Celiac-Disease-Impair-Drug-Therapy-in-Patients/Page1.html Where they (researchers) say/ask discussing Celiac Disease and whether it (celiac disease) can impair drug therapy in patients. Note the opening paragraph discussing this topic quoting ?Celiac disease is associated with numerous chronic conditions, such as anemia and malabsorption of some critical vitamins. Changes in the gastrointestinal tract, rates of gastric emptying, and gastric pH are responsible for impaired vitamin and mineral absorption." i.e., low gastric pH can effect absorption. It stands to make reasonable sense to me they are related conditions and one is being diagnosed for the other often or at least one is being confused as the other and treating one (raising your stomach pH) might treat the other since many of the symptoms? are the same. *** this/these opinion(s) are my own and do not reflect an endorsement by celiac.com of these ideas, comments, thoughts or opinions. I hope this helps! You the way it did me! Good luck on your continued journey, Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen. 2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things. Posterboy by the Grace of God,

MC can be quite harsh as a laxative if your using it as one very effective....I mean 2 boxes of exlax did me nada back then. For a daily supplement try just taking Nature Vitality Calm twice daily start off with 1/4tsp work your way up to 1tsp doses if you can. If this is too harsh on you use a Magnesium Glycinate like Doctors best, less effective as a laxative but will still help provide you with a magnesium you body can utilize.

Thanks will try MC I tried LBS although it worked but it was brutal on my stomach ??

OH odd info here but the best way I found found to use it is a slow low temp extraction into coconut oil, and using this oil in cooking. Use a mortar and pestal to grind your greens into a fine powder, and heat slowly in a pan with virgin coconut oil just very low temp for a while you will see the oils from the greens mix with the coconut oil. You can then use this oil blend in baking edibles, or in whatever you wish. I make it very weak myself with just small bag in a entire 16oz container of coconut oil. I do it for the medical benefits nothing else. I like using it in paleo breads, or drizzle a bit over salads, CBD oil also has some benefits I have noticed in smaller amounts and CBD is legal in most states the gold one seems to be the best.