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Omg...i Might Be On To Something


Rachel--24

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bluejeangirl Contributor

From reading on the MSG site it looks like most of them are also sensitive to either sulfites or tyramine or both. I havent been able to determine if I'm sensitive to sulfites or not because I buy stuff that is "unsulphered" just to be safe. I can only tolerate bananas occasionally...usually not. I react to avocados, all fermented products, cheese, yogurt, citrus is ok sometimes but not too much, raspberries...I can only eat a few, I reacted to raisins. This is all stuff that is high in Tyramine. My reaction is like a histamine reaction....some swelling and I can feel pressure and my veins swell so that they are visible and I can sometimes feel the blood pumping through. It causes a headache or migraine. I havent tried yogurt in a long time and I'm off dairy right now but last night I tested some and got this "histamine" reaction for a couple hours. I dont think I'm intolerant to dairy but more than likely its something chemical like the tyramine. I made sure the yogurt was organic and free of everything...the only ingredient was whole milk.

Racheal,

Hmmm this is so interesting.....I've never came across this info before. I know I'm a big MSG reactor and I need to expand my focus on what other things MSG sensitive people are also saying about other related chemicals etc. All I know is I get funny reactions with all the foods listed above. I know they're histamine reactions because I get wired and unable to relax. I'll sleep for about 5 or maybe 6 hrs and I'm wide awake and sneezing like crazy. What can make you sneeze at 4 in the morning......it seems to hit at this hr alot. I can get up at this hr. but I feel real tired in the afternoon and if I can lay down I'll fall asleep right away. Its a scary tired like if I'm driving I think I'd pull over.

I'm finding this thread very interesting. Nice to know others are having the same responsing as me. I find it comforting and want to jump in but I'm learning more than anything. I didn't connect the Aux-thingy stuff with MSG. Never heard about it .....and Grimway foods are the only supplier here in WI for organics veggies. They must be a pretty big operation.

So thanks for all your info, I think you must of been a good student in school...lol. Also for all others how are in the same boat who have been posting. Its fun to collabarate all the ideas good or bad and see if the dots connect.

blessings,

Gail

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bluejeangirl Contributor

On Food Network, Giada did a recipe for Espresso Zabaglione, which is WONDERFUL. It's basically a cooked custard made from egg yolks and sugar that you mix into your coffee instead of milk. I add some chocolate too and it's the best mocha I've ever had. Really creamy and rich tasting. Even better than heavy cream. And really the base of it is just the egg yolks and sugar, so if you don't want to chance such a big dose off egg yolks, the egg yolk and sugar concoction is pretty good by itself if you want to just eat a spoonful of it to see what would happen.

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Nancy

I was wondering, the recipe calls for 4 eggs yolks to 1 cup of coffee. Did you find this to be alot? How many servings did this make? I'm wondering if you can make the custard and keep in the fridge and add it to your coffee like creamer?

Thanks,

Gail

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Rachel--24 Collaborator

Gail I'm glad you decided to "jump in". :) Have you ever had any problems with the organic veggies? I wasnt aware that Grimmway was supplying the organic stuff everywhere...I just figured I couldnt find stuff from other farms because Grimmway is right here where I live.

So thanks for all your info, I think you must of been a good student in school...lol. Also for all others how are in the same boat who have been posting. Its fun to collabarate all the ideas good or bad and see if the dots connect.

Me...a good student in school? :lol::lol:

My Mom will probably laugh if she reads that. Actually I did well academically but I was a teachers worst nightmare as far as everything else goes. I've just never been one to follow rules very well...I like to make my own rules...which doesnt go over too well in Catholic schools.

I was asked to leave my Catholic High School. :ph34r:

It was all good though cuz for my senior year I was finally able to experience life outside Catholic schools...and I got to wear jeans and shorts! :D

Yeah...I do enjoy putting all the pieces the together and gathering info. from others here. It kind of makes things seem not so bad when you can make the healing process somewhat interesting and enjoyable. I would have lost my mind if I didnt have the support I've found on this board. I've learned so much here.

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Green12 Enthusiast
Yeah...I do enjoy putting all the pieces the together and gathering info. from others here. It kind of makes things seem not so bad when you can make the healing process somewhat interesting and enjoyable. I would have lost my mind if I didnt have the support I've found on this board. I've learned so much here.

I feel the same way. I sure wish I had the internet and support/informational groups like this back in 1992 when everything started for me. Was the internet even around then, I don't even know?

I have said before I don't regret a thing that has happened to get me to this point as far as health care professionals I have seen, protocols I have followed. I feel it was all necessary and part of the learning process, but I have made more progress doing my own detective work, seeking out solutions myself and exchanging information in this community than anything else I have done.

What a whirlwind this thread has been, it all happened so fast, SimplyV mentioned about corn and then all the corn research pointed Rachel in the direction of MSG and here we are.

Um, I also discovered something the last couple of weeks. I don't know if it will work for everybody, but when I am having a reaction I started to drink a little bit of apple cider vinegar in water (maybe 1 tsp. ACV per 1 cup of H2O) every hour for about 3 or 4 hours (hopefully that makes sense) For me, it takes the edge off the reaction, it does not in any way cure the reaction, but I notice that it lessens it a bit. It helps with the acid/alkaline ratio (I had read when we are in the state of reactivity we get very acidic). I just thought I would share.

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dlp252 Apprentice
Hey, wheres the farmers market at? I wonder where the produce is coming from since there are like zero farms left in the area...except that Oleson cherry farm on El Camino. I bet they have a farmers market at that flea market area off Berryessa...is that where its at?

I think there used to be one at Berryessa...it's probably still there, but I haven't been over there in years. There's actually two others. The one closest to me is in downtown Campbell...they have that all year round from like 9:00 a.m. to 1:00 p.m. every Sunday, rain or shine.

The other one is at the corner of Meridian and Blossom Hill in San Jose. I don't think this one runs all year, but it definitely goes through the summer--also on Sundays.

I'm sure most of the produce must come from your area...if I get my butt down there this weekend I'll ask someone, lol.

Oh, and I've recently seen signs of a Farmer's market on Wednesdays (afteroon or evening) at the corner of Camden and Union Ave...there's a shopping center (Cambrian Park) and I've seen the sign but not the market. I usually go by there on Thursdays so don't actually see the market.

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skbird Contributor

Hey Rach - just wanted to say "hi"! I had to kick corn to the curb earlier this year, once and for all. I was still deluding myself to think that organic corn was ok for me, but no, definitely not. I think for me it's an allergy, one of those slow reaction ones. Makes my stomach and head burn. Not fun. When I first cut it out, I couldn't tolerate any of my meds with a little cornstarch in them. Now I can, again, but I need to look at how I can go without entirely. It's hard with cheese and all the other things with corn slipped in. ANother is xylitol - though it is a wood sugar, most is made with corn. Though there is one brand - Open Original Shared Link

Also, I have found this page helpful: Open Original Shared Link

Hope I wasn't being redundant - but with 35 pages, I can't read them all!

Take care -

Stephanie

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cheryl50 Newbie
Hi Rachel's Mom :)

Hi everyone - I'm Rachel's Mom. Just wanted to say thanks to all of you for helping my daughter and this is a really great forum. She has come a long way in the last few months and has found many friends here. She has worked very hard and is determined to get her health back. There was a time when I was very worried but now I can see how much she has improved. I know it's been difficult for her, and all of you, but don't give up and stay strong. Good luck to each and every one of you. Thank you from the bottom of my heart.

Rachel's Mom :)

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jerseyangel Proficient
Hi everyone - I'm Rachel's Mom. Just wanted to say thanks to all of you for helping my daughter and this is a really great forum. She has come a long way in the last few months and has found many friends here. She has worked very hard and is determined to get her health back. There was a time when I was very worried but now I can see how much she has improved. I know it's been difficult for her, and all of you, but don't give up and stay strong. Good luck to each and every one of you. Thank you from the bottom of my heart.

Rachel's Mom :)

Hi Rachel's Mom! Very nice to meet you :) You have a great daughter--such a sweet person and an inspiration to us here. Rachel will get her health back--I just know it! Both of you are very fortunate to have each other :)

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jerseyangel Proficient

Hey Floridian--that's great news! Have you tried Bare Escentials? The eye shadows are just pure minerals.

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jerseyangel Proficient

Floridian--I get mine at QVC--here's the link--

Open Original Shared Link

Look to the left of the page, and click on Bare Escentuals--

They also carry it at Sephora--I think Julie ordered hers from there earlier today. We talked about it in the "What Make up Works For Everyone" (or something like that) thread.

Open Original Shared Link

Discussion starts at post # 71!

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jerseyangel Proficient
Ohhh thank you, thank you Patti... I'm going to order from there! I'm just worn out by fixing my diet and didn't want to research anymore.... plus I didn't want to waste money on something odd that might not work anyway.

No problem :) I'm not sure about Sephora, but QVC has a 30 day guarantee on everything (even makeup), so if you order the wrong color, or you just don't like something, you can return it, no questions asked.

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Green12 Enthusiast

Yep, that's right I did order my Bare Escentuals start up kit from Sephora.com and I am so excited about it. Thanks jersey for all of your help on that!!!

Floridian, I have been using Eco Bella mascara, purchased at the health food store. I seem to do ok with it, it has a very small ingredient list.

Rachel's mom, so nice of you to post! Thanks for all of your kind words. Everybody loves Rachel here! I really admire her strength and the fight in her to find a solution to get better and she has helped all of us in the process.

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jerseyangel Proficient

Julie--I don't need it yet, but I plan to try the Ecco Bella Mascara. I was at Whole Foods yeterday, and saw that they carry quite a bit of their products. I didn't look too long--husband was with me! :D I also want to try their lip stick.--Have you used it? Good?

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Mango04 Enthusiast

Ditto on the Ecco Bella mascara. It doesn't irritate my eyes at all (and most things do). I have a tip though....if you can find it in the mini size - buy that one! I get the mini size for like $5 and it lasts for a few months. I like to replace my mascara every few months anyway so I figure it works out pretty well.

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jerseyangel Proficient
Ditto on the Ecco Bella mascara. It doesn't irritate my eyes at all (and most things do). I have a tip though....if you can find it in the mini size - buy that one! I get the mini size for like $5 and it lasts for a few months. I like to replace my mascara every few months anyway so I figure it works out pretty well.

That is a great tip! I always replace my mascara every couple of months--and since I'm not working now, I don't use it as quickly as I used to. I will look for the mini! :)

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jerseyangel Proficient
Great tip! I also read that bacteria and junk grows in there after a while.

It does--you don't want to keep it around much longer than 3 months or so.

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Rachel--24 Collaborator
Hey Rach - just wanted to say "hi"! I had to kick corn to the curb earlier this year, once and for all. I was still deluding myself to think that organic corn was ok for me, but no, definitely not. I think for me it's an allergy, one of those slow reaction ones. Makes my stomach and head burn. Not fun.

Hey Stephanie!

Its been a long time since I've seen you here...I hope your new job is going well. Bummer about the corn. I remember you kind of questioning corn a long time ago. Hopefully you're feeling better w/out it though. :)

Um, I also discovered something the last couple of weeks. I don't know if it will work for everybody, but when I am having a reaction I started to drink a little bit of apple cider vinegar in water (maybe 1 tsp. ACV per 1 cup of H2O) every hour for about 3 or 4 hours (hopefully that makes sense) For me, it takes the edge off the reaction, it does not in any way cure the reaction, but I notice that it lessens it a bit. It helps with the acid/alkaline ratio (I had read when we are in the state of reactivity we get very acidic). I just thought I would share.

Hmmm...maybe I can try that one of these days when I'm feeling really brave. I'm kind of scared of apple cider vinegar...or anything "vinegar". :ph34r:

Rachel,

Actually, the first part of the book should be this thread so the reader can identify with all strange complaints and symptoms, in a book someone can tell you what you should do but to read how we all thought this and that, the true reasons for our sickness and then also the mistakes that we made by thinking this way or that way, I honestly think the mistakes we all make are what help us to see the truth. (LOL...does that make sense? ;) ) Okay... LOL... the point I was trying to make was to write the book..LOL

:lol:

It does make sense Floridian. Without all the mistakes we wouldnt be able to figure anything out. Its all trial and error (for me anyways). I pretty much make mistakes everyday...even when I was healthy. :P

The FIRST part of the book? :blink:

Sheesh....I think just this thread alone could BE the book! :o

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christine 25 Newbie
Nancy,

Thats exactly how I felt a couple weeks ago (and about 15 pages back) when I first found out all about MSG. I had always thought it was some kind of spice they put on chinese food. I was so clueless about whats in our food! :(

Now I'm just plain shocked and angry.

I'm in Manteca and they have strawberry stands all over, also some cherries and I see oranges or melons all the time too. I'm gonna start buying from them. During the week I'm in the Bay Area and thats when I shop at Whole Foods....my bill is always huge and I hardly get anything for what I'm paying.

Last week I went to a market in Stockton which has tons of organic produce and I got MORE than what I get at Whole Foods for HALF the price. I was shocked when they told me my total...I was expecting to pay alot. Unfortunately the veggies I got were from Cal Organic and I got sick but thats how I made the connection to Grimmway and Auxigro. I bought some dates there for $3.99 and they were soooo good. When I was at Whole Foods this week they had the same exact dates so I got all happy and bought them...turned out they were $6.99!!! :o

Can you believe that! Its highway robbery!

Now that I cant eat half the stuff in the produce dept. there I'm glad that I wont be paying those outrageous prices anymore. I'll be saving myself alot of money. I'm betting the stuff at the farmers market is alot cheaper. I cant imagine the prices would be anywhere near what I've been paying at WF. What a ripoff!!

The only reason I was shopping there was because I was sick and wanted to eat healthy. I spent hundreds of dollars on stuff that I had to throw out cuz I thought I was "allergic" to it. They shouldnt be able to put something as toxic as MSG in ANY food but who would have imagined it would be on fresh organic produce in Whole Foods?? Its so crazy...I sometimes think I'm in the twilight zone. :blink:

I've read some stories about people who were terribly ill with no answers and then for whatever reason they relocated to another country and immediately got completely better! Then when they returned to the US all their symptoms returned.....because of MSG and other food additives!

I learned that some other countries are very strict about what addtives are allowed in the food and they only allow maybe 5 or 6 additives whereas here in the good 'ol U.S we have over 500 additives/chemicals allowed in our foods. No wonder we have so many health problems here and no wonder obesity is now the norm....even with kids. This doesnt seem to be the case in other areas of the world. We are poisoning ourselves here. :(

So are there any reliable no MSG produce manufactures out there that anyone has had luck with?

Aparantly Grimmway is out and I always seem to have trouble when I eat at whole foods or when I buy organic. Is it just trial and error?

I want to know How can you tell where the crop has come from, like lettuce and stuff like that, when its just in bulk?

Ive wasted so much money, its like what do I buy and where do I buy it, I just want to eat food!

Christina

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Rachel--24 Collaborator
I want to know How can you tell where the crop has come from, like lettuce and stuff like that, when its just in bulk?

You cant tell where its come from unless you ask. There is no way to know whats been sprayed on the crops..so its just trial and error. Thats why they say its best to grow your own if possible.

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dlp252 Apprentice

Hi to Cheryl (Rachel's mom!)...thanks for posting!

Floridian - WOW, great you are feeling better! I also use Bare Escentuals makeup...almost all makeups will make my eyes burn eventually, but I don't notice it with this. I'm fortunate(??, lol) enough to live very close to several of their stores. :blink:

Julie - thanks for the tip on the mascara...it's getting time to buy new stuff anyway, so I'll see if my Whole Foods has it.

Well, I'm also feeling better girls. For two or three days I didn't eat my Bumble Bars and felt pretty darned good. I ate one yesterday and had bowel noises the rest of the evening...I also had one this morning and had lots of cramping and a nice visit to the ladies room afterwards, lol. So, there's my answer I think, lol. I seem to handle the MSG/Corn thing in small doses (like whatever might be in fresh produce) just fine, but just not processed stuff. I have to check the ingredients again to see exactly what it is that my system doesn't like. I also wasn't as hungry the last few days, so that's also a great sign.

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dlp252 Apprentice
Donna, I'm so very happy for you! I still have my struggles, don't get me wrong, but my life has improved 90%. For me it's a bit bitter sweet because I read everyone else on here who is still having trouble and it makes me feel bad. I wonder if the MSG thing is because it is already naturally in the food, so when they add it, it gives it over load :( so when we eat it (us all being of sensitive intestinal nature) we are over loading ourselves. Just a thought. So listen to this... :D my body lotion is olive oil and water and my perfume is pure vanilla extract for cooking... :D it's the only thing I can do right now... and the funny thing is the idea came from my brother, he's very, very into natural eating and so forth (which is probably why he's so freeking healthy) anyway, he's belief has always been... if you can not eat it DO NOT put in on your skin... everything is absorbed. My poor husband, he puts up with all of this and giggles through it, he loves my perfume tho... :lol:

I think the overload thing is probably right on the money. I don't think our bodies were meant to handle all the stuff they throw at us, lol. I like the idea of olive oil...my skin is so dry and I can't seem to find a lotion that doesn't make me itch more, so tonight I may slick on some olive oil, lol, and, I LOVE the smell of vanilla so that actually sounds good too.

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jerseyangel Proficient
Donna, I'm so very happy for you! I still have my struggles, don't get me wrong, but my life has improved 90%. For me it's a bit bitter sweet because I read everyone else on here who is still having trouble and it makes me feel bad. I wonder if the MSG thing is because it is already naturally in the food, so when they add it, it gives it over load :( so when we eat it (us all being of sensitive intestinal nature) we are over loading ourselves. Just a thought. So listen to this... :D my body lotion is olive oil and water and my perfume is pure vanilla extract for cooking... :D it's the only thing I can do right now... and the funny thing is the idea came from my brother, he's very, very into natural eating and so forth (which is probably why he's so freeking healthy) anyway, he's belief has always been... if you can not eat it DO NOT put in on your skin... everything is absorbed. My poor husband, he puts up with all of this and giggles through it, he loves my perfume tho... :lol:

I think your lotion and perfume ideas are great! I love the smell of vanilla--and I haven't been able to use any sort of fragrence for years now. Even in my 20's, perfume would make me almost faint. I just bought some Kiss My Face Pure Olive Oil Soap this weekend and used it this morning. It made my skin feel so nice and clean, yet moisturized. The soap only has 4 (I think) ingredients. BTW, your brother sounds an awful lot like my sister! She firmly believes that everything we use on our skin is absorbed.

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Rachel--24 Collaborator

Wow! Its great to see that everyone is making improvements...I'm feeling pretty darn good today myself. :)

I wonder if the MSG thing is because it is already naturally in the food, so when they add it, it gives it over load so when we eat it (us all being of sensitive intestinal nature) we are over loading ourselves. Just a thought.

Floridian,

From all that I've read...thats exactly right. First, our bodies produce a small amount of glutamates because we need it. Also we get a very small amount of glutamates from whole foods but most of it is "bound" glutamate which our bodies breakdown. The MSG that is in processed foods is not bound...its free....which is the dangerous kind of glutamates. So with all the free glutamates in everything we eat...its just too much for our systems and it builds up to toxic levels. If the overload is extreme or too much for that particular person... sensitivities to all glutamates can develop.

Just the other day I was listening to a broadcast about MSG...I think it was on the same site as the message board. Anyway I cant remember the exact numbers but they said that like 30 years ago we were consuming around 60 grams of MSG per year and now its something over 500 grams per year that we're getting from our food. I'm thinking if thats the "average"....my intake would have probably been higher than that because my diet was all fast food, soda, everything I ate was processed. I never ate anything in its natural state.

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christine 25 Newbie

I was a strict vegeterian for 10 years and Ive always eaten healthy.

I dont mind staying away from processed foods, but the produce thing scares me.

I guess I just have to find the kind of produce that doesnt bother me,

does anyone know if its ok to eat brown rice and if they have had scucess with a particular brand.

I found a sweet potato that doesnt bother me , think.

I went on the msg myth diet .com and read about the diet she sugessts eating and it includes brown rice and turkey i think, plus some other things.

Is it true that cooking increases free glutames in the food, I have read that too.

Also are mushrooms, tomatos and spinach and peas out?

Thanks

Christina

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dlp252 Apprentice

I do okay with small amounts of Lundberg brown rice. I usually don't eat more than 1/2 cup at a time and usually don't have it two days in a row. I make a big batch of it and freeze it in 1/2 cup portions then just cook some whenever I want to.

The produce thing scared me a bit too...I thought peeling it was good enough, but fortunately I don't seem to have a problem with it except for the slightly addictive nature of the fruit for me, lol.

I also do okay with just a little tomato and peas...again I don't eat a lot at one time and don't eat them every day. I have GERD so wouldn't want to overdo the tomatoes anyway.

I tried the olive oil on my legs last night. When I was young (really young) I used to use baby oil to sunbathe...the feeling reminds me of that. I'll have to put it on right before bed so I don't notice that feeling, lol. I didn't even put very much on--my skin did NOT glisten, lol. It DID make my skin soft though, and only one spot itched but that was only for a couple of minutes. So, so far this looks like a winner. My skin still itched even when using gluten-free Sav or California Baby lotions.

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      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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