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Wendy Cohan, RN

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Wendy Cohan, RN last won the day on September 9 2018

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  1. Hi,

    I know this post is quite old, but wanted to mention the article I wrote a few months ago for celiac.com called "For Persistent Fatigue on a Gluten Free Diet, Consider Adrenal Fatigue". Also, you should know that guar gum is a good bulk forming laxative, although it's not a bowel stimulant. There's a difference. It definitely will promote regular bowel patterns. You can use guar gum in replacement of xanthan gum in all your baked goods. Guar gum is also cheaper. I also wrote an article that talks more about this, called "Xanthan Sensitivity May be Complicating Your Recovery" last year on celiac.com. I'm not writing to promote myself, but I honestly think these two articles have important information that may aid in your recovery. I've suffered from malabsorption, adrenal fatigue, and constipation, although for some reason I'm rarely anemic.

    It sounds like you're doing much better now. I hope you're able to keep up the running...

    Wendy Cohan, RN

    So I just went back to the doctor because I feel like hell. I just had a really bad glutening, but I was feeling really tired and lethargic for a month before that anyway.

    First, she ran some tests, including testing my vitamin D level. Does anyone else have problems with this? I looked into it, and it turns out that using any kind of laxative is bad for this. She told me I could use docusate sodium every day and that it was safe, since it isn't like exlax or fiber/gluten based. Still, is this worse than I thought? She gave me the prescription because I'm taking and eating a lot of iron, which really backs me up. I can't stop taking/eating iron, and I can't eat enough vegies to counteract the amount of iron I'm taking.

    She also ran other tests like blood count and B vitamins, but these have all been normal in the last two years so I don't expect those to be different.

    -------

    Rant: I had to twist her arm to get tests for other fatigue issues like autoimmune problems. This woman still thinks I'm imagining things. If I'm willing to pay for it and I have a strong family history, why the heck shouldn't she test for it? I'm having trouble making it up the stairs without muscle fatigue even though I've been a runner for 10 years, and she just tells me to "try swimming because it uses different muscles," "try walking 15 minutes a day and working up," and "get back on the Prozac for energy."

    What. The. @#$&. I'm not even 30. Prozac? Yeah. I made an appointment with a doctor at Stanford as soon as I finished getting my labs done, when I was still in the parking lot.


  2. So I just went back to the doctor because I feel like hell. I just had a really bad glutening, but I was feeling really tired and lethargic for a month before that anyway.

    First, she ran some tests, including testing my vitamin D level. Does anyone else have problems with this? I looked into it, and it turns out that using any kind of laxative is bad for this. She told me I could use docusate sodium every day and that it was safe, since it isn't like exlax or fiber/gluten based. Still, is this worse than I thought? She gave me the prescription because I'm taking and eating a lot of iron, which really backs me up. I can't stop taking/eating iron, and I can't eat enough vegies to counteract the amount of iron I'm taking.

    She also ran other tests like blood count and B vitamins, but these have all been normal in the last two years so I don't expect those to be different.

    -------

    Rant: I had to twist her arm to get tests for other fatigue issues like autoimmune problems. This woman still thinks I'm imagining things. If I'm willing to pay for it and I have a strong family history, why the heck shouldn't she test for it? I'm having trouble making it up the stairs without muscle fatigue even though I've been a runner for 10 years, and she just tells me to "try swimming because it uses different muscles," "try walking 15 minutes a day and working up," and "get back on the Prozac for energy."

    What. The. @#$&. I'm not even 30. Prozac? Yeah. I made an appointment with a doctor at Stanford as soon as I finished getting my labs done, when I was still in the parking lot.


  3. Hi,

    I wrote an article on xanthan gum sensitivity for celiac.com last year. It's fairly common, and unfortnately mimics many of the gastrointestinal symptoms of celiac disease - i.e. gas, diarrhea, and bloating. I have a mild form of it, but some of my cooking class students have severe symptoms from even very minor amounts. It sounds like xanthan gum could be the culprit. Unfortunately, it is very common in gluten free products, and even non g.f. products like ice cream and creamy salad dressings. Guar gum is a very good and also less expensive substitute. Also be aware that whole foods recently recalled some of their gluten free products because they were tested and found to not be gluten free. I just saw this notice on a bulletin board in Boise Idaho, but it was a copy of a newspaper article, so you might be able to track it down.

    Good luck.

    Wendy Cohan, RN

    I've found that I consistently get diarrhea within about 6 hours after eating the Whole Foods gluten free sandwich bread. I noticed I was experiencing the problem only after eating sandwiches I had made, and I ruled out other things by throwing out the mayonnaise and using different deli meats and the only common thing that was left was the bread. It only has a few basic ingredients: Nonfat milk, rice flour, tapioca starch, eggs, sugar, canola oil, yeast, salt, xanthan gum, lemon juice.

    I've eaten all of these things either alone or in other products and haven't noticed a problem. I did have a slight case of diarrhea Saturday night and I remembered I had tried some of the Whole Foods banana bread that morning which has the following: Banana, rice flour, sugar, butter, eggs, pecans, brown sugar, soy flour, sweet rice flour, cream, baking soda, natural vanilla flavor, salt, xanthan gum, lemon juice.

    It comes on quickly when it happens, with cramps. I have to say if I slip and have a bit of regular gluten containing food, such as birthday cake on someone's birthday, I don't get this type of problem. I don't generally have a diarrhea problem even if I eat gluten.

    Has anyone else experienced a similar problem with Whole Foods gluten free baked goods? Is it possible I'm just intolerant of the type of yeast they use, for example, but other types of yeast are ok? What about xanthum gum? Can that cause it? I'm just guessing at this point. Thank you in advance for your ideas.


  4. Thanks for your reply, Kyle. I'm sorry for all you've been through. My mother had colon cancer after years of having diverticulitis. Hopefully you've avoided any cancer, which does unfortunately occur at a higher rate in celiacs. I'm glad your wife is a doctor, too.

    Wendy

    Dear Wendy,

    am a 52 year old male, one year post celiac dx. 2 years post colectomy. For the prior few years I would get low grade fever, lymphocytes and blood in urine, slightly elevated wbc. Regular doc assumed prostatitis, I was male and had lower quadrant and thigh pain. I would take cipro for a while and be ok. I Then ended up in hospital very ill. Gastro dx diverticulitis hospitalized 6 days, IV antibiotics and scheduled for colectomy in 1 month. Made it three weeks and was back in the hospital. I was given IV antibiotics for 5 days then surgery. I was going to be a new man. I never got completely healthy. I believe that I had both the prostatitis and diverticulitis because of the closeness of my bowel issue to my prostate. I defiantly displayed the symptoms of both issues. My wife is a Family Dr. and suggested that we run a celiac panel on a hunch. All came back positive. Gastro did an endoscopy and my biopsy showed flattening and destruction of the villa of the small intestine, barrettes (having a Laparoscopic Nissen in Dec), and pre cancers cells in stomach. He theorized that undigested food flowing to the large intestine contributed to the diverticulitis. Typical finding for someone of my age with long term celiac undiagnosed. This summer I had a serious case of Prostatitis. Received Outpatient IVs and am now on 90 days leviquin. (Good reason to marry a Doctor) Because of the celiac I have Malabsorption syndrome. Urologist ran test for zinc, b-12, vita D, folic acid ect... I was low on all the aforementioned even though I am taking b-12 shots and supplements. I asked him if there was a connection between Celiac and prostatitis. His answer was not that I am aware. He did state there is a connection between low zinc, magnesium and other vitamins along with the ph factor in urinary tract. Uro has me take a vitamin C 1000 and a cranberry tablet night and morning, along with zinc at lunch time. Seeing how a lot of celiacs have Malabsorption issues I would conclude that there is a connection whether directly or indirectly.

    Strictly Anecdotally,

    Kyle Johnson


  5. Hi,

    Has anyone ever heard of this? Apparently I have superior mesenteric artery syndrome. Also known as the nutcracker syndrome. I have celiac disease and I am on a completely gluten free diet. I've done some research on the Internet, and it says people get the nutcracker syndrome because of untreated celiac disease. However, I eat like 10 or 11 foods and I phone every company of every product I eat to check if there is gluten in it. I do eat out at restaurants however I talk to a manager usually and explain what I need. Has anyone heard of this? Thanks

    Danielle

    Hi Danielle,

    I've heard of it - had a patient with it in the hospital (I'm a nurse). It took my persistence and multiple doctors and multiple imaging tests to find out what was wrong. The doctor demanded a psych. consult, as they often do when they don't know what's really wrong. I am so glad you were able to get a correct diagnosis.

    Wendy


  6. Hi,

    Has anyone ever heard of this? Apparently I have superior mesenteric artery syndrome. Also known as the nutcracker syndrome. I have celiac disease and I am on a completely gluten free diet. I've done some research on the Internet, and it says people get the nutcracker syndrome because of untreated celiac disease. However, I eat like 10 or 11 foods and I phone every company of every product I eat to check if there is gluten in it. I do eat out at restaurants however I talk to a manager usually and explain what I need. Has anyone heard of this? Thanks

    Danielle


  7. Hi,

    I'm a nurse writing a book on the bladder and other uninary health areas. In my research I ran across a link between chronic prostatitis and gluten intolerance or celiac disease. I've also written extensively in the past on a link between gluten intolerance/celiac disease and bladder symptoms, and am including this informaiton in my book. Adding in some anecdotal evidence on another link, to chronic prostatitis, would strengthen this correlation. I've seen a post or two on the forum about chronic prostatitis, but what I'm really looking for is a first hand story or two or a hundred telling me that going gluten free helped your chronic prostatitis or other urinary problem, in men. I have lots of stories for the book regarding women.

    Can you let me know what your experience has been? All confidentiality would be protected. I may not even "tell" your story, but just include it in the category of "anecdotal evidence" of a link.

    Thanks a bunch in advance for anyone willing to tell me their story. It will have the potential to help a lot of other men.

    Wendy Cohan, RN


  8. I was wondering if anyone else had adrenal fatigue syndrom before they found out that they had Celiac disease? What I've been reading is that one of the stressors that can lead to adrenal fatigue is gluten intolerance. I had adrenal fatigue syndrom for about 2 years, started feeling better then found out that I had celiac disease. Is it possible to have not known that I had celiac disease and got the adrenal thing from that? Because I also read that a lot people don't know that they have celiac disease until something major happens in their life (which is what happened with me)

    So I'm kinda confussed, if anyone knows about this I would love some tips:-)

    Hi,

    I'm an RN and have been writing a book that contains a chapter on adrenal fatigue, and has a section on the link between gluten intolerance and adrenal fatiuge, but I would love to have more references to really make a strong arugment. When you said, "I've been reading that one of the stressors that can lead to adrenal fatigue is gluten intolerance..." can you tell me what your sources are? Did they come from books, articles, scientific journals, on-line etc.? THis subject is really important, and I am going to see that it gets the publicity it deserves. So far, I've linked adrenal fatigue to chronic inflammation, and adrenal hypofunction to an autoimmune condition that occurs with Celiac Disease, called, "autoimmune adrenal hypofunction". I'd love to learn more, and hope to hear from you.

    Wendy Cohan, RN

    Portland, OR


  9. For those having trouble with legumes, be especially wary of the dark red beans like kidney beans, which are higher in lectins. For some reason, many people seems to be able to better tolerate pulses (lentils and pea relatives), like the tiny orange indian lentils or yellow dal beans, especially when well cooked, and taken in smaller amounts. They are easy to cook, delicous, and nutritious. My specific food allergies are: dairy, gluten, sugar, mold (not really a food, but in aged foods and accidentally eaten on some small berries), chocolate/coffee, corn, and oats. I do OK with rice, sorghum, amaranth, quinoa, teff, starches, white potatoes, all nuts except peanuts and cashews, and all vegetables (thank God). I also do well with melons, cherries, stone fruits like nectarines and peaches etc. I have to be careful with grapes, even green ones, and all red-skinned fruits like dark Italian plums. These foods contain vaso-active amines that trigger migraines.

    Does anyone know of a good list of gluten-free cosmetics, skin-care products, etc.? I counsel people on following a gluten-free diet, but have a hard time keeping up with all of the personal care products out there. I'm OK with toothpastes for now, except wondering if anyone knows if Nature's Gate "Creme de Peppermint" Natural Toothpaste is gluten free?

    Wendy Cohan R.N.