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Got Better- Now Getting Worse!

Guest BERNESES

By Guest BERNESES
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest BERNESES
Guest BERNESES
Posted

I feel like everythjing makes me sick now. I'm eating gluten-free as can be and now I'm noticing that my symptoms are constantly present in some form (nowhere near as bad as in the beginning) so I'm suspecting leaky gut and multiple food intolerances. I've checked a million times for a hidden source of gluten and I'm 99% sure there isn't one. I'm eliminating soy, dairy, distilled products, alcohol but what else should I look at/ into?

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Eliza13 Contributor
Eliza13
Posted

Berneses,

I know the feeling. I have suffered all week, with nausea earlier in the week and my stomach as big as a house all week. I'm pretty sure that I did not ingest any gluten, but the one new thing that I ate all week was pork. I'm thinking that perhaps I am allergic to pork, but am not sure. There was a strange ingredient in the pork (sodium something), but I do not think that it has gluten. What should we do berneses??? Eat Paleo-style, SCD style???? Just not sure where to start. I do have the will to get better because having my stomach this way is awful....I don't wish it on anyone. I already do not eat gluten and dairy and have felt better this way. I am willing to eliminate more if need be, but I am not sure how.

Skar.

Looking for advice and help.

Lisa Mentor
Lisa
Posted

Are you careful around the horses? Wearing the mask, gloves, washing your hands well, etc?

Guest BERNESES
Guest BERNESES
Posted

Hi Lisa and Skar- I went twice (riding- the last time I went was last Friday September 30th) and was very careful. I wore the mask when I groomed Queen and gloves and washed my hands etc. but my symptoms came on (the vomiting, diarrhea, noxious farts etc) about 24 hours later so I don't know what to think. I suppose it's possible that I am THAT sensitive. Is it? Good Lord!

It breaks my heart- I talked to the woman at the barn and told her I was going to stay away for awhile until I felt better. Do you think it could have been that though. I mean, the ring is dusty and I can't wear a mask when I ride so it's possible it got in my mouth that way. if that's it, I'm so sad. :(:(:(:(:(

Lisa Mentor
Lisa
Posted

Bernese:

Apparently, I am learning that many people have different levels sensitivity. Perhaps you are one of them.

Try as you have indicated, a three week, break from the horse and see how you feel. I don't know what your recovery period is after "glutened". Maybe three weeks may be enough for you to determine where it is comming from.

I don't want you to be discouraged about riding. If horses are a problem, believe me, we and other will find a way that you can continue. The piece of mind and the pleasure are well worth the time you spend.

We'll help you work out this problem. Take a break, get better and we'll brainstorm to help you continue.

Keep the faith. :)

Lisa B.

Guest BERNESES
Guest BERNESES
Posted

Thanks Lisa- yeah- generally three weeks is my time frame. Right now everything I put in my mouth gives me symptoms. I won't give up the faith- I will ride again! Thanks for being so encouraging! Beverly

jenvan Collaborator
jenvan
Posted

berneses-

are you eating any new foods now that you did not before going gluten-free? i think lisa also has the right idea about experimenting with a break from the horses. i hope that you can return to it. how fun that must be--i've never ridden before. (ps--like the anne lamott quote--i am a big fan of her...)

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Guest BERNESES
Guest BERNESES
Posted

Not really- but I'm starting to wonder if I am insanely intolerant to gluten or if there other intolerances starting to come out like casein, soy, corn, nightshades, alcohol, anything distilled. I was doing OK in like May and June and then I dog-sat for three weeks and either I got sick from handling the dog treats or these other intolerances started to emerge. I don't know what to think.

It was like one week in August, I drank SKYY vodka (which is clearly labeled gluten-free even though distilled beverages are gluten-free anyway- SKYY is triple distilled) and tonic with a lime and then a week later I drank it and had a gluten-like reaction. I just don't know what to think anymore. Amy's mac n Cheese (the gluten-free version with rice macaroni) made me violently ill last weekend (but I had just been around the barn).

I started taking a supplement called IntestiNEW which has L-glutamine in it. It seems to settle my stomach so we'll see what it does in the long run.

I'm sad though :( Beverly

Eliza13 Contributor
Eliza13
Posted

Berneses....

I think I read that alcohol is not good for celiacs b/c it affects the permeability of the gut. Have you read dangerous grains?

Skar.

ravenwoodglass Mentor
ravenwoodglass
Posted

"It was like one week in August, I drank SKYY vodka (which is clearly labeled gluten-free even though distilled beverages are gluten-free anyway- SKYY is triple distilled) and tonic with a lime and then a week later I drank it and had a gluten-like reaction. I just don't know what to think anymore."

Our family reacts strongly to distilled grain beverages and vinigar, yea I know we aren't supposed to. Have you tried a potato vodka? I drink Luksusowa with no after effects at all. I was drinking Woodchuck cider but seem to also react to something in that. I think I'll stick with my wine.

"Amy's mac n Cheese (the gluten-free version with rice macaroni) made me violently ill last weekend (but I had just been around the barn). "

Amys has some foods that have the 'made in a facility that processes wheat, nuts, soy etc.. on the packages. We find we react quite often to these unfortunately.

Rachel--24 Collaborator
Rachel--24
Posted

I don't drink alcohol of any kind right now and I dont intend to until I'm feeling 100% or very near it. I think it will definately cause problems and delay healing.

aikiducky Apprentice
aikiducky
Posted
Our family reacts strongly to distilled grain beverages and vinigar, yea I know we aren't supposed to.

<{POST_SNAPBACK}>

I react to vinegar as well. Nobody has apparently told my intestines that they're not supposed to! I haven't tried any distilled drinks lately, I prefer wine anyway.

Pauliina

Guest BERNESES
Guest BERNESES
Posted

Yeah- no alcohol or distilled anything for me right now until I'm feeling 100% for QUITE awhile. I'd rather feel good than have a cocktail. I wasn't sad about that- I was sad about potentially not being able to be around horses for awhile and even sadder if that's what caused my reaction.

The Amy's product thing is interesting- I've had reactions to their stuff a few times but always attributed it to something else but maybe it was the Amy's that contributed. No more Amy's for me. That's too bad because it's quick n easy but ...oh well.

I haven't read Dangerous Grains but I intend to. I'm also going to ask to be tested for additional intolerances. Thanks everyone, Beverly

Claire Collaborator
Claire
Posted
Not really- but I'm starting to wonder if I am insanely intolerant to gluten or if there other intolerances starting to come out like casein, soy, corn, nightshades, alcohol, anything distilled. I was doing OK in like May and June and then I dog-sat for three weeks and either I got sick from handling the dog treats or these other intolerances started to emerge. I don't know what to think.

It was like one week in August, I drank SKYY vodka (which is clearly labeled gluten-free even though distilled beverages are gluten-free anyway- SKYY is triple distilled) and tonic with a lime and then a week later I drank it and had a gluten-like reaction. I just don't know what to think anymore. Amy's mac n Cheese (the gluten-free version with rice macaroni) made me violently ill last weekend (but I had just been around the barn).

I started taking a supplement called IntestiNEW which has L-glutamine in it. It seems to settle my stomach so we'll see what it does in the long run.

I'm sad though :( Beverly

<{POST_SNAPBACK}>

Try out something else with a lime in it. This is something that gives me a reaction very similar to the reaction I would get if I ate a slice of bread. Speaking of L-glutamine: you can buy it separately - recommended at least 5 grams per day supplemented. Claire

Guest BERNESES
Guest BERNESES
Posted

I can't thank you all enough for your input- I swear, if it wasn't for this board there are times when I would think I was insane. Well- Iam, as my sister points out, but not ready to be committed just yet- unless it's to a gluten rehabiliitation center.

Actually, I wish they would make one. Someplace you could go and eat gluten-free for a year guaranteed, get massages, your own custom-compounded medications, do yoga and not have to worry. Myabe I'll open one. In Zoolander with Ben Stiller he opens The Derek Zoolander Center for Kids Who Can't Read Good. Maybe I'll open the Bernese Mountain Dog Center for People Who Can't Digest Good. With many Bernese Mountain Dogs running around :D

But, I digress. Anyway, I checked the Amy's gluten-free mac 'n cheese box (and the shepherd's pie and mexican tamale pie too). The mac 'n cheese box was one that had the "this product is produced in a plant that also processes wheat....." darn- that's nasty. So maybe that was it. The other two boxes did not say that on them.

Ravenwoodglass- I have tried Chopin potato vodka and was fine (but that was back in August). I may try it again but not until I'm 100% better for quite awhile.

Claire- the lime thing is interesting. Are you saying you react to limes the same way you would to gluten? I remember back in my early twenties when I returned home from Mexico I went to the dermatologist because I had this weird rash on my arm. He took one look at it and said, "Have you been out of the country drinking drinks with limes?" He knew right away what it was. God- bodies are so strange.

Thank you all for helping me out. Keep it coming- I REALLY appreciate it! Beverly

julie5914 Contributor
julie5914
Posted

oh my god, I would live at that place! I would love to know for sure that I was gluten-free, and man are my muscles sore for no good reason! I recently had some trouble with relapse symptoms and could not figure out what it was - I have already realized that distilled things are a no go - instant nausea.

I worried that I may be lactose intolerant now or caisen intolernat. I have not ruled those out yet, but I recovered to back where I was when I stopped eating this Publix frozen yogurt with Heath candy. Heath is supposed to be ok, and most of Publix's fro yo is ok, but they sent me a list of gluten-free food, and this wasn't on it. I figured maybe it was because they can't rely on Heath to stay gluten-free, but I am not taking chances.

Maybe it is things that say natural flavors or modified food starch? I usually eat those, but sometimes they are bad news.

Zoeysfat Rookie
Zoeysfat
Posted
oh my god, I would live at that place! I would love to know for sure that I was gluten-free, and man are my muscles sore for no good reason! I recently had some trouble with relapse symptoms and could not figure out what it was - I have already realized that distilled things are a no go - instant nausea.

I worried that I may be lactose intolerant now or caisen intolernat. I have not ruled those out yet, but I recovered to back where I was when I stopped eating this Publix frozen yogurt with Heath candy. Heath is supposed to be ok, and most of Publix's fro yo is ok, but they sent me a list of gluten-free food, and this wasn't on it. I figured maybe it was because they can't rely on Heath to stay gluten-free, but I am not taking chances.

Maybe it is things that say natural flavors or modified food starch? I usually eat those, but sometimes they are bad news.

<{POST_SNAPBACK}>

Hey, does anyone know what the sore muscles is about? I am somewhat new to all of this, have been gluten-free since April. Early on after I was diagnosed I noticed my leg muscles were really sore, it was hard to just get down a set of stairs. It went away, but yesterday and today I am having the same problem. They feel like I ran a marathon without a warm-up! Is this a symptom of the disease, or am I just getting old? Any help?

Denice

Guest BellyTimber
Guest BellyTimber
Posted

Sore legs - I get nearly all the time and have been trying to live gluten-free for nearly 3 years.

L-glutamine - they recommend it well before meals - there was info on this in a thread started by "Bean", I can't remember in what section of the board.

Gluten rehab centre - please count me among founder residents, free of charge licks & tickles by gigantic shaggy dogs included.

Guest BERNESES
Guest BERNESES
Posted

I think sore muscles has to do with calcium/magnesium. taking a cal-mag supplement has helped me.

OK- now explain this. I threw up this morning- no clue why? Then around noon, I started to feel better so I made some red curry with chicken- all ingredients gluten-free. Felt OK. Then I ate two pieces of Glutino cinnamon raisin bread with Fleishmann's margarine (which is supposed to be gluten and casein free) felt horrible about an hour later and vomited on my way to class. Help!!!!!!!! I don't know what's going on- going to my primary tomorrow. a friend of mine, who is an MD, mentioned giardia in addition to food allergies. I am NOT getting better- I am getting worse. Whaa! I want my Bernese Mountain Dog Center for People who can't Digest Good.

jenvan Collaborator
jenvan
Posted

berneses-

i wish you were doing better girl! vomiting is one thing i've never had...

just want you to know i'm totally on board with the Bernese Mountain Dog Center for People Who Can't Digest Good. i officially volunteer :)

julie5914 Contributor
julie5914
Posted

Gosh, yeah, the vomiting is bad - I have never done that. Sounds like you are being very careful too. It almost sounds like an allergic reaction more than the gluten intolerance, since with intolerance you can usually keep it down (it just goes straight through).

Guest BERNESES
Guest BERNESES
Posted

Thanks Everyone- I saw my doctor today and she tested me for giardia. She actually thinks it may be viral since so many things are making me sick. She gave me phenergan for the nausea and it is working really well (but boy, does it make you sleepy!). She just told me to get lots of rest and follow the BRAT diet (bananas, rice, applesauce, tea and gluten-free toast) for a least three days until we get the resuits back.

I actually like it when the doctor tells me to get lots of rest because I normally push myself and in this case, it's been medically mandated. :) Beverly

(I'll keep you posted as I devlop the center Jen!)

Guest BERNESES
Guest BERNESES
Posted

OK- this is weird. I'm actually going to start a ne thread on it because now I'm REALLY confused. She gave me phenergan for the nausea and it's like a wonder drug. It relieves my nausea, give me back my appetite and the goosebumps/chills go away. It makes me a little sleepy but mostly relaxed and less moody. Does anyone have any experience with it? I'm taking it in suppository form (I call it the silver bullet :P ) Beverly

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