Emily Christine

Could I Have Celiac Disease?

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I'm a 21 year old college student who has had major stomach issues since a bad episode of food poisoning my freshman year. I just finished up my junior year and things seem to have gotten much worse as time goes by. I also have extremely bad anxiety which I have been on medication for for years and I'm seeing a counselor for the anxiety. Since the food poisoning I have had ibs symptoms like stomach spasms, loose stools, and constipation. When I lived in a dorm my sophomore year, I had to go to the bathroom after every visit to the dining hall. It would take me about 20-30 minutes to go to the bathroom. I had pencil thin and loose stools. I didn't make a big deal about it. I always have to sleep a lot. I get stomach spasms if I don't get enough sleep. Some nights I can sleep 10 to 14 hours and still feel fatigued. When I moved out of the dorms into my own place I was constantly constipated or had loose stools; it was either one or the other. I finally decided to get help because I was sick of feeling like this. I began taking Bentyl, Metamucil, and citrucel. Eventually I began having to go to the bathroom all the time. I no longer had much constipation and I began going to the bathroom from 5-20 times some days. I stopped taking the Metamucil and Citrucel at this point and I started seeing a GI doctor. He had a bunch of tests done and one was a celiac disease blood test. It came back negative, but I recently went on a gluten free diet and I felt really sick the first couple of days, but then I started feeling a lot better. About a week or two into the diet I caved and had pizza. Later that night I had cramps then I really did not feel that great all weekend. I felt really sick after eating pizza 2 days ago so I went back on the diet. Last night I had a rotisserie chicken that contained sodium phosphate(which is a preservative in food, but it is also used as a laxative in enemas and laxatives that are taken before a colonoscopy procedure. I've been sick since 10 pm last night. I was feeling better and I ate gluten free cheesy ravioli and I started having issues again. I'm thinking it's the sodium phosphate because I can't stop going to the bathroom. It's not water diarrhea, but it's definitely loose stools. I've had joint pain for the past 6 months and I've lost 10 lbs since January dealing with this. For a while all I could eat was bread and bannanas, which would leave me constipated. I went from 112 lbs to 102 lbs. It has interferred with my life so much. Once I was on the gluten free diet I started to feel better so I'm curious if the Celiac blood test is often accurate or if it sounds like I have Celiacs disease? I'm too afraid to have a biopsy, so I'm going on symptoms.

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It could be Celiac. It could be other food intolerances. It could be non-celiac gluten sensitivity. We can't tell you, we don't know.

As far as I can see you have a few options:

1) Get a blood test. See if you have the antibodies to celiac. If you do, your Dr will probably want to do a biopsy. I wouldn't sweat the biopsy, it was a breeze. May be positive or neg. I had screaming high antibodies but wanted the biopsy for closure and to be sure. Mine was absolutely, definitively Celiac so I am one of the "lucky" (???) ones. If you have the antibodies and the biopsy is negative (or if you decide to not have the biopsy, many Dr's are diagnosing with blood work), give the gluten-free diet a really good chance. It may take a while to feel better.

2) You may not have the antibodies to Celiac. Dr. probably won't do a biopsy. Whatever, we can deal. You can go gluten free and see if your symptoms resolve.

If you want to avoid all testing, go gluten-free and see what happens. Be strict though, which is why I would at least initially recommend the testing. For me, I was SO sick that not eating gluten is a breeze now that I know what caused it. Many people are not so lucky to get such a positive test result but still feel TONS better gluten-free.

Good luck!


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SOrry, posting twice!!!

I didn't see til now that you had been tested and it was negative. You can still be gluten intolerant OR have celiac disease and not enough antibodies to show up...I would give the gluten-free diet a shot. My first month after going gluten-free, I felt HORRIBLE!!! WOrst flu ever. It slowly got better. The crappy thing (no pun intended)O is that healing can be SOOOOOOOOOOOOOO slow that you don't know if you are better or what. Give it lots of time. While you are at it, look at your dairy consumption, it can cause problems as well...

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I went gluten free just because my daughter had to. I tested negative on a blood test, but I feel a TON better following a gluten free diet. The doctors kept telling me it was because I had my gall bladder out 13 years ago. While you are at an age that makes it difficult to follow the diet, it is possible and it does pay off. My daughter felt anxiety beginning in 2nd grade. She will finish 8th grade tomorrow. She told me a week ago she doesn't feel the anxiety any more. We've been gluten free 9 weeks. The doctors have tests but you know how you feel.

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Thanks so much for the information! I've been gluten free since Tuesday and I've been super sick since Tuesday night. I can't eat or drink anything without running to the bathroom. I am on a stomach only antibiotic for SIBO, small intestinal bacteria overgrowth, but I've read that that could be caused by Celiacs disease or food allergies. I've already been on a dose of this antibiotic and it really helped. The doctor put me on another dose and ive been back on it for a good 1-2 weeks and I have been fine. I don't think the medication is related to how I've been feeling since Tuesday. (The medication has very few side effects). I'm very achy today and very uncomfortable. It doesn't help that it's 94 degrees! It's killing me to not be at the beach right now that's for sure!!! But anyways my anxiety is through the roof today of all the possibilities and I HATE the unknown. My first cousin has Celiacs disease and my father has colitis. My GI doctor told me that he really doesn't think it's colitis at all (I have no blood and it's not sharp pain like my father has) or Crones. He says that he thinks it's ibs/sibo but he wants to do the colonoscopy and the biopsy to check for chrones, colitis, and Celiac disease. I guess my cousin tested negative in the blood test for celiacs and then tested positive with the biopsy. My GI doctor is sending me to the lab right now to make sure I don't have food poisoning and a few other things..just to be on the safe side...and I think another celiac test. My moms picking me up since I haven't eaten a thing and my anxiety is through the roof! I appreciate all the responses because this is really taking a toll on my health and well being. I'm naturally little but I'm getting very tiny and I'm not healthy at all. I'll let you know if I find any answers!! Thanks again for the information and responses.

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  • Who's Online   16 Members, 1 Anonymous, 464 Guests (See full list)

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    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.


    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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    • Thank you so much!! I'm going to start today. 
    • Over 100 usually means you have Celiac.  Even if the doctor doesn't biopsy correctly.  Usually, the biopsy results are 3-5 working days.  
    • Hi everyone.  I just received my labwork and my gastro scheduled an endoscopy for tomorrow to diagnose if I have celiac. My bloodwork showed:
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    • Thanks for all the good info guys.  I really appreciate so many responses so quickly.  So heres what I've been eating for the last 11 days: chicken or ground beef - grilled; sweet potatoes baked potatoes or rice with salt only or sometimes butter; green beans or carrots well cooked; rice chex with almond milk; canned peaches in juice; unsweetened applesauce.  Then I recently made chicken bone broth and made soup out of it, adding back in some of the chicken plus green beans, carrots white potatoes and rice.  Haven't been eating eggs because I was told on the other site I could be sensitive to eggs (I really miss them)  No cheese or milk.  That's it - that's what I've eaten for 11 days now.  Please tell me if I need to eliminate any of those items from my diet.  I really need some calories.   Other info- I started out on 9 mg of Budesonide (very expensive).  It stopped my D quick in a few days, then turned into constipation.  But when I reduced to 6 mg a day the D came back.  I am back on 9 mg a day but this time its not stopping the D.  So that's it - 9 mg a day budesonide and the gluten free; dairy free diet, but still have two episodes every morning of watery D.  Then that's it for the day, but I feel wiped out for rest of day.  0 energy and continuing to lose weight.   I ordered this today but maybe shouldn't have: https://www.amazon.com/gp/product/B00BGVNNNI/ref=oh_aui_detailpage_o01_s00?ie=UTF8&amp;th=1 Its Gluten-free; dairy free; soy free and egg free.    
    • I have Ulcerative Colitis, it flares after my celiac to gluten also, and dairy exposures, along with soy, spices, and if I over do it on stuff like onion/garlic. It also in my case hates fructose/glucose, rare but some people have that also as a trigger.

      I like you enjoyed a "not so restrictive" diet on my Rx for the disease, I could have spices, garlic, onion, mexican food, without flares....but since  not being able to afford the $600+ a month Rx I found alternative treatments. These will help benefit yours also as the method of coating and soothing the intestinal walls is the same do read here on what I found worked. Also go on a bland diet, avoid legumes, grains if you can, I found nut meal porridge (high in calories and fats) to be great, starches, carbs, sugars, flared mine (you might be backwards and find with rice porridge but not nuts, we are all a bit different). You can find all kinds of recipes for it. Roasted meats/crock pot meats made super soft and easy to digest like a shredded slow cooker roast/chicken. Baked avocado with eggs inside, Scrambled eggs, I found made extra moist with a bit of almond milk/coconut milk whipped in before cooking and using a microwave omelette maker to prevent the "hard edges". I stew in greens into these like canned spinach to get my greens and have spoons of  nut butters for desserts like almond butter (avoid peanut butter it is a legume). Avocado is also quite gentle on the guts for most people and chock full of healthy fats and calories.

      Greens need to be cooked to mush so the tough fibers do not irritate your gut....hate to say it but you should be able to "swish" the food in your mouth before you swallow so eating will take a bit longer.
      AS you heal you will be able to eat a bit more like grain free breads, soups, stews, roast, sheet pan meals, stir fry, egg dishes, etc.

      If you having issue with diarrhea try a higher potassium diet or taking some, it helps dry out your stools. I found using 2tbsp of coconut flour in my eggs to make them set up added fiber and potassium. I have various grain free flat breads on this base also,

      Keep a food diary and find your triggers going to a base super simple diet,

      Taking BCAAs or bit of protein powder/protein bars between meals can help with preventing weight loss, I just Julian bakery bars, or protein powders like Jarrow Pumpkin, and my own blends....you can probably get by with blends like I used to from Nutra-key V-pro and MRM Veggie Elite.
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