raspberryfirecracker

Fantastic!! Both for you and anyone googling us, haha

🎉

Wait, @Nikki2777 how was the seltzer??

I reversed my interstitial cystitis... Haven't had SIBO in over ten years. Can eat as much starch as I want. That's what your life can be. At least 1 in 100 people have celiac disease, in some countries it's higher.

We'd definitely all prefer not to be permanently restricted from foods we were raised on, but we're all incredibly grateful to know the cause of our symptoms so that we don't have to suffer needlessly or even die from preventable complications. The occasional ground-up grain from a field, isn't worth what you've been going through, celiac or not.

Knowing the cause of your symptoms is a huge strength, and a powerful direction towards healing, not a weakness or restriction.

https://pubmed.ncbi.nlm.nih.gov/22760575/

Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease

Victor F Zevallos et al. Am J Clin Nutr.2012 Aug.

Quote

Background: Celiac disease is an enteropathy triggered by dietary gluten found in wheat, barley, and rye. The current treatment is a strict gluten-free diet. Quinoa is a highly nutritive plant from the Andes, with low concentrations of prolamins, that has been recommended as part of a gluten-free diet; however, few experimental data support this recommendation.

Objective: We aimed to determine the amount of celiac-toxic prolamin epitopes in quinoa cultivars from different regions of the Andes and the ability of these epitopes to activate immune responses in patients with celiac disease.

Design: The concentration of celiac-toxic epitopes was measured by using murine monoclonal antibodies against gliadin and high-molecular-weight glutenin subunits. Immune response was assessed by proliferation assays of celiac small intestinal T cells/interferon-γ (IFN-γ) and production of IFN-γ/IL-15 after organ culture of celiac duodenal biopsy samples.

Results: Fifteen quinoa cultivars were tested: 4 cultivars had quantifiable concentrations of celiac-toxic epitopes, but they were below the maximum permitted for a gluten-free food. Cultivars Ayacuchana and Pasankalla stimulated T cell lines at levels similar to those for gliadin and caused secretion of cytokines from cultured biopsy samples at levels comparable with those for gliadin.

Conclusions: Most quinoa cultivars do not possess quantifiable amounts of celiac-toxic epitopes. However, 2 cultivars had celiac-toxic epitopes that could activate the adaptive and innate immune responses in some patients with celiac disease. These findings require further investigation in the form of in vivo studies, because quinoa is an important source of nutrients for patients with celiac disease.

On 2/4/2021 at 12:01 PM, Scott Adams said:

Keep in mind that ~10% of celiac also have an intolerance to the protein (Avenin) in oats

Ahhhhh! So that's it! I'm going to mention this in all my anti-oat replies 😂 Thank you, somehow knowing they've identified "the thing" in oats that makes some of us with celiac disease ill just helps me feel less bonkers. Scott you should do a post on the research that showed some species of quinoa cause reactivity in vitro (cells from celiac patients were put with the proteins) because I unfortunately react to quinoa, too, saponins minimised or not, and I have the feeling they're going to confirm it in vivo too if all the fellow can't-eat-quinoa people on this forum are anything to go by 😬

Whatever you have, I hope your body can recover from the damage it's already caused, and that you won't sustain more.

I use this one, I think it's corn free but someone more skilled in corn reactivity will have to confirm:

https://jason-personalcare.com/products/powersmile®-whitening-paste-vanilla-peppermint

If it's indeed corn free you might can check their other flavors. If you have severe corn allergy there are many websites and lists made by people who have corn allergy and need to navigate the world around that.

Also I've never heard of a gluten toothbrush...unless you're sharing it with someone, so don't do that!

Thank you both for trying to assist, I think my issue might be the type I bought.

The link shared is so on point! The little test cheese I have is very fresh, better for my MCAS because the less aging = the less histamine issue, but according to the 🐐🧀 experts it's SUPPOSED to taste "like that" when it's fresh and basically only a cheese fiend would be able to enjoy it. Chevre improves the longer it's aged, it says.

Awol I'm not sure I've ever even seen a sheep around these parts, let alone the cheese from one! 🐑🐑🐑

I wish my usual non-dairy cheeses weren't always sold out. But I was thinking 1 - 2 ingredient fresh natural cheese, if I didn't react to it, is better than fifty random ingredients thrown together trying to imitate it. But as far as I know, I didn't react poorly to goat cheese so I will buy some goat milk next and see how that goes. Although that, too, is now always sold out. The alternatives used to be the only items left on the shelves, I guess I'll have to wait until Spring when all the fad dieters give up their resolutions and let us sick people have our food again! If that sentence makes me sound bitter, it's the goat cheese talking 

2 hours ago, pokey449 said:

I’ve been attempting gluten free as well but recently learned I was not successful because I’ve been eating oatmeal that was not designated as “gluten free”.

Your post reads like, "person accidentally glutening themselves with oatmeal wonders why they don't feel better" 🤣 Many of us can't eat oats at all. I can't, gluten-free certified or not.

Also that level of famotidine is intense; are you on a multivitamin and monitoring your b12/folate levels especially?

If FODMAP were your answer you wouldn't be continuing to get SIBO over and over again, losing weight, continuing to get malnourished. Your story is pretty typical of so many of us pre-dx, I know I've experienced very similar; it can be difficult to accept any disease. Good luck, stay open.

8 minutes ago, Scott Adams said:

8 minutes ago, Scott Adams said:

I am about to re-do food sensitivity testing myself because I know that there are things in my diet that I'm allergic to on some level, and I want to see how I feel if I eliminate them for a while.

 

I messed up that box, oops.

That makes a lot of sense Scott! I'm curious to read how others did, too, and what their doctors called food intolerance/how they handled it. Where I am, intolerance is a non-allergic response, and food allergy is food allergy, testing is done by immunologist. I've had a ton of intolerances, but no allergies whatsoever after 3 times testing. I can confirm my arm went down by holding 1 apple though... 🤦🏻😂

If anyone's asking whether food allergy testing is a good idea I will never disagree; seems "intolerance" testing can mean all sorts of things! 

Jessie to me your post reads as a medical emergency. When you read these replies, immediately inform your doctor of what you just told us--call the office, schedule the next appointment asap, leave a message with the nurse, write them a message if they have an online portal, something. They need to know. They should've already at least talked to you about life-saving intervention, about gastric/feeding tube, and/or PPN, or TPN. I have to wonder if they haven't because they don't know. Are you having arrhythmia? Headaches? Blurred vision? Numbness? Shortness of breath? Please tell your doctor what you told us. Yes this happens to people, and they have to get help to recover.

I once had a naturopath tell me which foods to eat based on whether she could push my arm down while I was holding them.... 🤨 Just picture, me holding an apple in one hand, my other arm sticking out in the air like a kettle spout. Repeat with pear, yogurt, bread... I may have secretly been on a hidden camera prank show? 🤭 What I'm saying is at least yours is taking bloodwork, but do I think it's a waste of time? Yeah probably... 

Celiac is autoimmune, if you can't have milk because of casein (body can mistake it for gluten, or just plain react to it regardless) that's autoimmune, but food intolerances seem to change based upon how your overall health and gut are doing, and aren't permanent, so your results today might not even matter in a few months. You could heal so much that you don't have them anymore, or you could keep doing what you're doing (which you won't, or you wouldn't be on here) and develop even more of them. Think of it like, you wouldn't drink 3 cups of coffee when you have the flu. But you wouldn't blame the coffee, it was just, why on earth did you have coffee while you had the flu?! I.e. you wouldn't eat a bunch of histamine-heavy/mast cell triggering/gut irritating/oil-laden/chemically-processed/inflammatory foods while you're trying to stabilize. You get intolerant to them because one of their properties exacerbates something, it's not always an IGE allergy etc, so maybe that's why those tests are hit or miss.

I'm glad I read that bit about thiamine and antibiotics, having just started abx myself this week. I haven't gotten my checkup bloodwork back yet but think I'll take some extra anyway. Never once occurred to me to take extra vitamins with antibiotics!

It's completely possible to calm down your immune system and not end up with SIBO again, and I don't know of ANY quicker way to do it than the diet kitty mentioned. Especially if you're getting it because of celiac reasons. It addresses everything at once, including being completely celiac-compliant...! I like to sort all the foods into random groups per week, and see what I can come up with. Your body heals while you're busy googling what you can make with bok choy. 😂

I've been the person who couldn't even eat a potato, now I eat even what used to be my worst "food intolerance" (soy) without reacting, if I've been taking care to keep histamine low/mast cells calm/vitamins stable. It may seem like a maze but they're all very connected, it makes a lot of sense in the big picture. And there's definitely a light at the end of the tunnel. Buy that book! 🤓

That's a really good point Scott.

When you're on proton pump inhibitors and your stomach acid gets too low, it causes a rebound effect and you end up with even more stomach acid than you would've had before treatment. Our body is pretty smart like that. 

GERD for me correlated with something I was intolerant to, so it resolved after going gluten free followed by dairy free. After being dx'd with it basically my entire life. Last time I had any issue was a couple weeks ago when I had real shredded cheese on a salad, oops.

Just out of concern, if there's any conceivable way to switch the PPI out with something less invasive, maybe try--as you can already tell, they're just a bandaid for short-term turmoil, they're not designed for longterm use, and most frighteningly, multiple studies have shown people that do take them can only do so for about two years maximum before they increase your risk of death from ALL causes! I can barely believe they're legal, to be honest.

H pylori comes to mind if you've ever dealt with ulcers, as well. It alters your stomach acid production to help itself survive, is very common, you can get it just from water. Antibiotics are the treatment. Olive leaf extract works against it as well. Lots of things for you to consider! 

Is it the type of sore throat something like chloraseptic or a numbing cough drop would help, a sore throat like the acid burn you get at the bottom of your throat from GERD, or not an internal sore throat but an inflamed sore-lymphatic-ache around your throat that doesn't actually involve the esophagus? 

Well that's horrifying... I do think there's no telling how the crazy chemicals in medicine would combine with the assay in the strips, so I'm glad they tell you upfront not to take it to heart.

You can find out the exact inactive ingredients in your medication by looking up its NDC number on the bottle (I think that's what it's called) and searching for it in combination with the pharmaceutical company's name (also on the bottle). You should end up finding links to the company's website and images of the exact ingredients for your pill. You might have to scroll through a list of similar variations like pill color etc to find yours.

Your can also internet search the numbers/letters written on the pill and go to the Drugs.com page it links to, but I would double check the info you find because sometimes the inactive ingredients information might be for an older formulation.

I think legally (in USA) it has to mention if it contains gluten or the top 8 allergens, so I wouldn't be concerned there, but you might still get nauseated if you drink too much; that's my two cents. Insert joke about my username here 🤭

Please for the love of goat someone tell me how to make goat cheese edible?! Someone suggested I put it in rice pudding to give it a cheesecake flavor and it tasted exactly like it had just come back up, not that it was on its way down! 😱🤢😓

I never ate much regular dairy to begin with, but my goat cheese experiment is not going too well. I read recipes explaining how "creamy" it is but what I currently have in my fridge probably scaring the produce is a tiny wedge that tastes like tart, tart cream cheese.

Bump. Don't get scoped after already going gluten free!

(And what trent said--sorry I didn't see there was a page two until I'd already replied!)

9 hours ago, Hoody123 said:

pathology courses in massage therapy school

This is not the same as being a diagnostician; knowing a disease exists doesn't make anyone a medical doctor trained to diagnose diseases.

9 hours ago, Hoody123 said:

I was diagnosed with IBS and leaky gut in college when I first developed these reactions. I was not born with them. Therefor I do not have a genetic disease

This isn't an accurate understanding of celiac disease, Hoody. You are born with the genes, but genetic diseases can either be active from birth, get triggered in adolescence, or get triggered in adulthood. People who have genes for Huntington's for example, will start developing nerve damage in their 30s and 40s. 

9 hours ago, Hoody123 said:

I believe celiac to be . . . (one of the strongest on the scale). I do not know if my understanding is correct

It's not correct. Celiac disease is not "the strongest" response to gluten on a scale of symptom severity. Someone who has a severe allergy to wheat gluten might go into anaphylaxis and die from exposure to a breadcrumb, and someone who has celiac could get a rash, mild bloating, and a headache and have no idea it's because of what they ate.

It's genetic in that, you inherit genes which come with these instructions to the immune system: If you find the presence of gluten, produce antibodies. Those antibodies are what do the damage, to our own tissues. Celiac is an autoimmune disease, and is one of the "great imitators." Stress makes any autoimmune disease worse, and easing stress makes any disease easier to live with, but it doesn't stop the underlying illness.

Your descriptions sound exactly like so many people here before we accepted we might have more than "an intolerance" which we could control by just living better. I count myself in that group. What you wrote is frightening, because we know that kind of denial, and we know how bad the disease sometimes has to get before people in denial are forced to acknowledge it. The truth is celiac disease is a silent killer. The truth is anyone with gluten intolerance should be evaluated by a doctor who can test for the antibodies, genes, and a biopsy if necessary (they're starting to diagnose without the biopsy if other tests are overwhelmingly positive) because it will get worse. Undiagnosed people just get diagnosed with other, seemingly unrelated diseases that never needed to occur if they'd have stopped ingesting gluten sooner. There is no easier time to live gluten free than right now. I wish you the best.

1 hour ago, trents said:

Genetic testing for vitamin deficiencies? I haven't heard of that before.

I hadn't either until about 6 years ago; some genes are directly correlated with deficiency if you get the worse versions (MTHFR, VDR), others are responsible for a culmination effect, so that you might need extra such-and-such like kitty said, or on the opposite spectrum have to be careful with them, depending.

When anything throws deficiencies at us, your predispositions of how you'll methylate vitamins are going to make it either easy or tricky to treat. I wouldn't be concerned with it, Tracy, unless she gets much sicker trying to treat deficiencies she already has, upon which her Dr will probably start by measuring levels of things that are more likely to be the root of the problem. Right now there's no problem, so don't add more to your plate! There's a lot of very intelligent patients here who can suggest options if anything weird happens 🙂

21 hours ago, trents said:

I have always heard that supplementing with B vitamins is safe because they are water soluble and we just excrete any excesses in our urine. Is this no longer a valid concept? Maybe the science around this has changed.

It depends on how you metabolize them, genetically, much like celiac. People will never know if they have any issues with this unless taking vitamins starts to cause problems. Then you might have to go down the route of genetic testing to see which nutrients you need more of, which forms of them you can/can't take, and vigilance in case you're getting sick because taking one thing is exacerbating a differenct deficiency. Most of the population has balanced-enough genetics that even if one or two genes are a bit slow, or a bit fast, they can still process vitamins fine overall; they'll never have enough comorbidities + wonky genetics to need worry about any of this! I wish I were in that group 😅 But basically what Placey said, vitamins are medicine and they're strong enough to help or hurt in different circumstances. If people take them and just get better then they're in the best position, because they.. just get better! I hope your daughter is in that group, Tracy! If I take the wrong amount or form of anything, I can get extremely ill, but as long as I stay on top of any deficiencies and take the things my particular body needs, it's manageable. It's aggravation on top of an already aggregating disease, but we're lucky to have inventions like life-sustaining nutrients we can just pick up at the store as needed. 

Yenni,

Goodness I feel like I'm just going around warning people of histamine, but, well, the last time I got sick with fish, it was because I let it thaw much longer than usual and just about poisoned myself with it! Fish has to be frozen at all times from the moment it comes out of the water until minutes before you cook it, or you can get scromboid poisoning. If at any point the fish you ate had a blip in the frozen chain, you can get a food poisoning-like reaction; it's a histamine overdose in the gut, basically. I love seafood but I have to be careful to prepare it correctly because it doesn't take much extra histamine to make me ill. Just went through an attack of that in December, actually, due to fish! 

Completely unrelated but since people are talking about popcorn, I will mention, spent $15 on an air popper (no oil!) and never looked back 😂

Hi thorn,

I second the low histamine autoimmune paleo diet. There's a list out there for "whole 30, low histamine" which is essentially exactly this; a good place to start if you're feeling overwhelmed.

I would get ill when I talked too much as a consequence of mast cell activation syndrome, which is common alongside celiac disease. It's a type of white blood cell that gets.. uppity. When I get that talking symptom now, it's usually after I've been eating too many foods (or doing other activities/taking supplements) that cause histamine to build-up so I'm starting to get overloaded; it takes 2-3 weeks for histamine to build up enough to cause me symptoms, and subsequently that long to flush out of your body, so like Scott said, give it some time. I can't do oats, either. Or quinoa. Literally had rice pudding with coconut milk for dinner last night, haha.

I rarely get those flares anymore, but when I do I take extra antihistamines, especially if I know I have to speak a lot while already flaring. They're a bandaid until I recover. I'll take a combo of Benadryl and Pepcid and Ibuprofen right before the activity, to bring back down to normal the chemicals my mast cells drive up. Prescription options for my nausea are Zofran or Reglan as every other nausea medicine makes me worse. Zofran works on the exact chemical the mast cells drive up but it's hard to get, but Reglan works for a lot of us too. Whether you're having histamine issues, MCAS, or another issue, the best natural things I've found for nausea are ginger, and peppermint tea. When I've had dangerous losses of appetite my doctor gave me Megace, or a short course of cyproheptadine, to get it back up; those worked within just a few days. You've got a lot of options.

Bananas and pineapple are huge histamine triggers, so if you're considering the autoimmune low histamine diet, try swapping them out for now.

If you're able to get tested for B1, please ask for it. Get tested for as many vitamins as they'll let you, you'd be amazed the things we're missing. Doctors also might not tell you of subclinical deficiencies. Mine didn't.

A nutritionist is a GREAT idea, they will be able to help you take the right combo of vitamins so that you don't worsen one thing trying to treat another. I have to take very specific combinations of B vitamins regularly, and a different combo of all vitamins when mast cells flare. If you address potential histamine or MCAS over the next few weeks and start to feel better by the time you see your nutritionist, that's critical information for them to know, also. You can get a good game plan going and prevent the preventable. Good luck! All of your problems sound very treatable, don't worry ☺️

Hi charks, have you considered pushing this back until you can get the vaccine? I'm not sure dental health matters very much if you die two weeks afterward... 🤪 

That's a lot of info, but none of it impacts my suggestion to this new person seeking help. What I said is very relevant to the situation, at this particular point in time, for this person, concerning the topic I brought up to them. Nothing more, nothing less. Take care.