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Mermaid's Mom

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Everything posted by Mermaid's Mom

  1. My daughter had itchy eyes and redness from SIBO. We learned about her SIBO at the same time that I stumbled across the Nemechek Protocol for SIBO and it made such sense that we went straight to his protocol to resolve SIBO (which has no food restrictions or special diets) - so while I can't give you feedback on the diets I can tell you that the Nemechek protocol worked wonderfully for us
  2. You should research SIBO. It sounds identical to what you are describing and also has Gluten intolerance as a symptom. I put my daughter on the Nemechek protocol for SIBO a few months ago and all of those symptoms cleared up. I wrote and update about it on here not long ago. You should read it!
  3. OH and it turns out that WORST thing for SIBO - the thing that causes it to grow out of control and make things worse in Probiotics!
  4. Thanks!! I think about you often as well - you were such an "anchor" for me to cling to when I first landed here!
  5. Hi Everyone. I haven't been on here much but some of you may remember me. I am just returning to give you our update. So what brought me here originally was that my daughter was textbook Gluten Ataxia and when we put her on a gluten-free/DF diet she improved so much. But like everyone else - she seemed to get "glutened" all the time and was clearly VERY sensitive. Once we had her on the gluten-free/DF diet for a while we realized she was still getting sick and figured she must be also allergic to some of the other common culprits; corn, oats etc. And on the advice of our Naturopath we put her on a Paleo diet. I will spare you a LONG story of our journey following that - but the end result was that I learned about something called SIBO - which stands for small intestine bacteria overgrowth. Celiac's are prone to SIBO. So I ended up also finding a Dr. in Arizona that is doing AMAZING things resolving SIBO in people. He has a developed a health plan for curing SIBO that is called the Nemechek Protocol. It is dead easy to follow and all natural. So we started to implement the protocol and here we are 3 months later and my daughter is essentially cured from most of her issues. She suffered from: Chronic constipation - Gone. Sleep issues/insomnia - Gone Sensory Processing Disorder - Mostly resolved. All sensory issues except some food/texture issues but even that is melting away daily and she is eating way healthier! Chronic Fatigue - 100% GONE!!! She was literally absent/late 150 days of school last year and now - NOTHING a true miracle! Dysphagia (difficulty swallowing) - gone Dyspraxia (A coordination disorder) - GONE. almost 2 ys ago she stopped swimming in her mermaid tail. Stopped most physical activity. She is now doing cartwheels and swimming in her tail again! Brain fog - Gone. Central Auditory Processing Disorder - 100% gone! Her test results 12 mths ago were BAD. She only had 40% processing in one ear and 65% in the other. Now hearing is NORMAL!! ADHD - GONE. She went to Summer school and the teacher had no idea she had ADHD. Her daily report cards said that she was "focused and on task" she also got E (excellent) in skills like organization, and time management. AND...she is now eating ALL FOODS. Even gluten!! It took almost 3 months for her to be able to tolerate Gluten (it was still making her queasy) but this past week - pizza, buns, cookies!! NO ISSUES. She still has cognitive issues - difficulty trying to recall a word (could NOT remember the word Lunch even with hints) and still forgets what she was about to say but those issues are improving daily. She is now able to do mental math etc. Anyway...just thought I would share. This Dr feels that most people with Celiac also have SIBO and that the SIBO is what is giving everyone all these issues. Let me know if you have any questions!
  6. 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!
  7. 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.
  8. 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!
  9. 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?
  10. 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??
  11. 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 s$#&s and giggles and some we scrunched our faces up and kept our $$ in our wallets.
  12. 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
  13. 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.
  14. 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.
  15. 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!
  16. 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!
  17. 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!
  18. 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!!
  19. Will do absolutely! She said my daughter needs to be wheat, barley, rye, oat, corn, rice, quinoa and dairy free. Do you still consume any of those?
  20. We saw a Naturopath today and I learned all about this and we are now currently treating my daughter for it. It was a LOT of info but I will give you the jist of what I understood (very over-simplified) from the meeting. I would love any additional info as well feel free to clear up anything I seemed to have misunderstood. For starters it was lovely to have a person who was willing to see the WHOLE picture. I gave her the full chronological history, all diagnosis's and all current supplements. She explained that there is a gene MTHFR. We all have it and some people have one that is very effective and some have one that is slow. That it is directly related to 5 systems (the sensory system is one, then digestive, neurology etc). These 5 systems all work together like clock gears. If one gear is wonky they all get impacted. You begin to see things go wrong potentially from all the systems. So sensory issues, anxiety, brain fog, constipation etc. MTHFR gene has a direct impact on the processing of the B's (B12, B9, B6). She said that even if there is no B12 deficiency in bloodwork people with this deficiency still require B12 (myelinated!!!) supplements because they don't effectively process B's. Once this derails (meaning it goes undiagnosed) that B deficiency starts to impact those 5 systems. Oh and there is a genetic component. Many people (50%?) have a defective MTHFR gene but many will have no symptoms. The severity of the symptoms can be from mild to severe. She says all grains are anti-inflammatory so we now need to follow a Paleo diet and she tweaked our supplements. The B12 we were using was not myelinated so we bought one that is. She swapped our Magnesium Citrate to Mag Glycinate. Kept our Probiotic and Omega 3 but added in an E8 (all 8 types of Vit E) and Cod fish oil. It was super interesting and now I wonder if Gluten Ataxia and MTHFR are the same issue?? Any thoughts?
  21. Color me confused. I went to Costco yesterday and there were 2 products there that had GLUTEN FREE plastered on the box but then in the ingredients was a: May contain wheat. How is this possible? How can they still put gluten-free on the box? We should be able to trust gluten-free labeling no?? And second question: How many of you would still buy that item? I REALLY wanted to buy the Island Way Sorbet for my daughter as it is her FAVE. But I didn't want to take the risk. Maybe when she is healthier? I mean it is SORBET?! LOL So frustrating!
  22. Oh I had heard his name and read some stuff about him but hadn't come across this video! Thanks!!
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