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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Mermaid's Mom

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  1. Oh wow! I haven't been here in days because I have been POURING over the most recent SIBO literature! Have you heard of Dr Nemechek? https://www.nemechekconsultativemedicine.com/ His approach is very simple and essentially you STOP using probiotics and start taking Inulin. It is all very fascinating and falling in with what we are seeing with our daughter. In a nutshell he says that the bacteria that has overpopulated is "damaging" the system (second brain). That they are meant to stay in the colon but start to grow out (for multiple reasons) and expand into areas of the intestines that should be populated by other area specific bacteria. They slowly take over and expand out further. Probiotics feed EVERYTHING and make the SIBO worse and Antibiotics kills EVERYTHING and does nothing to solve the problem either. There is one antibiotic - Rifaximin that stays in the colon and does not permeate its walls. Other than that he suggests that you FEED the good bacteria and allow them to thrive and naturally win back the territory. Inulin is the food that they eat and taking Inulin (Chickory root fibre) will nourish the healthy bacteria. 3 months ago we stripped away Gluten and dairy and saw HUGE results and then lost them. We also introduced a very high quality multi-strain probiotic. Dr Nemechek says that the fact that some people see gains when they go gluten-free/DF because they essentially "starve" the bad bacteria and there is a bit of a dying off. But it is not fixing the core issue and often you can see food intolerances and symtoms worsen even though you are still gluten-free/DF. This is EXACTLY the dynamic we are seeing with our daughter. She is eating AIR but is still in pain and now her Sensory issues seem worse than ever (thanks to the probiotic maybe)? He also says that the healthy bacteria secrete an acidic compound that kills off the bad bacteria which also explains why some people feel better when they consume ACV. I find the entire thing fascinating!
  2. You're right that area is gallbladder! Well we just saw the Naturopath - she was puzzled by the recurring stomach aches also but allows for the fact that it COULD just be healing - she did have that gluten exposure that I mentioned 2 weeks ago. But she decided to start her on a digestive enzyme. We shall see.
  3. Thanks everyone!! I think I have noticed a pattern...she is in pain and it is resolved as soon as she has a bowel movement. I could be wrong but it appears to the be the case. Will keep an eye on it. The naturopath told us to "work towards" a grain free/Paleo diet and my daughter committed 100% and stripped away everything. But after 7 days she asked if she could on occasion consume this handful of items that have scant amt of cornstarch. We see the naturopath today so we will see what she says. My daughter is kick ass so if she says to strip them away also I suspect she just will LOL! As a mom I have to tread carefully. Sometimes its better to have someone else suggest it!
  4. I am trying to tease out what is going on with my daughter: We went Gluten/Dairy Free March 1 and she steadily got better but looking back through the journal tummy aches were still randomly occurring on a semi reg basis. But she was improving so much that my focus was mainly on the improvements. Then we brought back dairy and it all went down hill and she went right back to all her symptoms and tummy aches prob got lost in the fact that she now had so many other worse symptoms like headaches, fatigue etc. The we went to the Naturopath and stripped her diet back to Paleo. She is now NOT eating: Wheat, barley, rye, oats, corn, rice, quinoa, millet, etc. Zero grains (though we do allow a trace amount of cornstarch that is in just a half dozen things she eats) and no dairy. It is as hard as hell but it has really reduced the concerns about cross contamination. She is not eating anything that could be problematic. And again she is getting better. But again the stomach aches keep hanging on. They usually come at night. They must be painful as she just shuts down and needs a heat pad etc. She also has a lot of nausea about food. Too nauseas too eat. Or becomes nauseous WHILE eating. It has only been 2 weeks of grain free so maybe I am just being impatient but I am worried that this is not just normal celiac healing?? She says it is stabbing pain and in the areas above the belly button below sternum. Severe heartburn? Anyone who is familiar with Ulcers doesn't think it is ulcers. What are your thoughts? Does this sound like the early stages of healing?
  5. But it is interesting to wonder about the WHY? Why are some of us more sensitive? Why can my son eat ALL THE WHEAT and still poop and math like a champ and my daughter was home sick today because she ate a Vegan, dairy free, nut free, soy free, animal cruelty free cupcake yesterday. It was stamped with ALL the FREES (except Gluten) and a mistake was made. But she is 13. Stripping away all the foods (for now) really helps us ensure that mistakes happen less. She is whole foods. If we don't have to wipe the dirt off - she ain't eating it. LOL! While I am typing this she is making a trail mix of nuts and seeds and dried fruits for desserts. That is the extent of this "treatment". At the same time I take her shopping and teach her how to read labels and what to look for. I'm lucky she is the age she is because she is savvy. She is motivated. She learned that she cannot have pasta, pizza, cakes, cookies , muffins, waffles, etc etc. Not even the gluten-free versions and you know what she said "That is fine - bring it on!" She was *CURED* for one month. She wants it back BAD. But back to the topic - WHY? Why can't some of tolerate wheat? Why are some SUPER sensitive? Could there be a gene that is defective? Maybe??
  6. This statement: know there is an issue when you google and everything comes up with a blog or a site that SELLS you something. Is exactly what my Dr touched on when I spoke to her today. Worth noting the Naturopath isn't trying to sell me anything (other than the supplements we are already on) and really only advised that I put her on a Paleo diet and sit back and watch. I do feel the supplements are a *right now* item that will be phased out so that sits fine with me. So in a nutshell, I find the idea of the defective gene incredible and even promising, but if the *fix* was some high-priced isogenic meal plan flown in from Madagascar I would have kept on walking. The fact that eating Paleo is the advice given (and we have seen that she can improve from diet) makes it something I am more than happy to get on board with just to see what happens! Why not? My other option is to watch her decline. But I am as skeptical/hopeful about this solution as I was about Vision therapy, Astronaut therapy, therapeutic listening etc, etc. Some we tried for shits and giggles and some we scrunched our faces up and kept our $$ in our wallets.
  7. I appreciate ALL your words of caution. Sometimes I forget that the internet doesn't *know* my personality and only calculates who I am based on what I type. After 3 years of being on this journey and countless "well that didn't work" therapies and medical opinions I really don't find myself jumping up and down yelling EUREKA! anymore when someone else gives me yet again, another opinion. Am I confident that we have cracked the code of my daughters issues - not at all. But I do LOVE going down the going down the rabbit hole and get excited about new ideas and making connections to things I already understand. I have a brain that loves to learn and be challenged and information like this excites me in general. And I am always open to the possibilities. I still believe in Mermaids But what I DO feel confident about now is that my daughters issues are mostly related to diet but probably originated in DNA. I do think that gluten-free/DF has helped a lot and I am curious to see WHERE Paleo can take us. I am not saying she will Paleo for life. But I am not saying she won't be. We will make decisions as we go and discuss reintroducing things as time passes. It's all very loosey goose and I know that doesn't always work for some people. We will not be getting a Naturopath to do genetic testing!! In fact we may not test for it at all. It is a yes or no test and that is sort or irrelevant to me. Many people have a yes and no issues. It is the severity of how defective the gene is that matters and there is no test for that. But thanks for your input
  8. We have never checked thyroid or homocysteine levels. My mother in law has thyroid issues and there was some speculation that I did as a child so it is VERY possible. It's been on my mind but with kids like this the temptation is to check everything! LOL I would run every thing known to man but I have to work around a kid who has been tested to DEATH so I pick and choose my battles. No red flags for any thyroid issues so I have focused on other things. In terms of her Neurological Issues - OMG I want to say that we literally CURED her. After only 4 weeks she was a different child. The improvement was as extreme as you describe. Then we slid on the dairy and we lost it ALL. Literally all of it.
  9. Going to the Dr today to get her B12 shot and find out next steps.
  10. My understanding of this gene defect is that MANY people would test as having the gene defect. But not everyone would have any problems. The severity of the issues is the result of HOW damaged the gene is. So I could go in and test as having a MTHFR gene defect but my gene is still performing at 97% and who really cares. My daughter's however might only be "performing" at 30% hence why she is having issues in EVERY one of those systems. Diet is the only way to scaffold wait the gene fails to do naturally. Someone who defective gene is performing at 75% may only present as having ADHD. Yes she is another person who doesn't believe in ADHD. She says it is the result of MTHFR defect. If both parents are carriers you get the chance of a more serious impact.
  11. Also - pulling a quote of yours over from the other post - you said: I just recently started giving him vitamin B12 (thank you posterboy for sharing info on this topic). Despite his bloodwork not showing B vitamin deficiency, that seems to be helping with those very minor lingering symptoms. Hoping that's not a placebo affect. And in fact my Naturopath directly addressed this even though my daughters B12 was only slightly low (as per medical standards) she said: Even if her bloodwork revealed that she WASN'T deficient we still have to give methlyenated B12 because the body still needs it. Essentially the B12 may BE THERE (in the body) but the MTHFR gene directly affects the methylation system. Otherwise known as the B system (B12, B9, B6). So the right type of B12 is vital for success!
  12. artistsl I just read this post fresh out of being at the Naturopath and you should really research MTHFR gene deficiency. I started another post about it here yesterday but I am not sure is you saw it. Nevermind see that you are already there!
  13. Who said I wasn't going to get the gene testing?? Right now she is on a Paleo diet and some supplements I am not exactly pushing the limits of science here or branching off into dark magic?? LOL!
  14. I was LITERALLY just replying to your post on the Gluten Ataxia thread to suggest that you look into MTHFR!! The biggest thing that caught my eye is that you mentioned thyroid and MTHFR is a thyroid condition!!