Newly diagnosed and desperate for some pain management suggestions

[Ali-D]

Hi all! I just got the results of my biopsy and I officially truly belong on this forum. I'm celiac. Not sure how much information is relevant, I'm 28 years old, female, didn't feel any symptoms until about 3 years ago and don't seem to react immediately to eating gluten which is why it took so long to consider celiac as a cause.

I needed to gluten up for the tests to be effective and I'm struggling a lot with pain. It's not so bad on a daily level but it comes and goes in waves, and tonight I'm in a particularly bad spot with the pain and desperate for suggestions. My doctor said don't take pepto bismol, and so did a friend who's celiac. I think something about needing to let the symptoms run their course or something? I'm not sure, but if anyone here has some pro tips on reducing the pain I could really use the help. (Can I take T3s for this? Advil? Pepto? I'll even take a placebo at this point as long as it works!)

It's so frustrating to google for information because all the sites just say "strict gluten free diet!" Thanks for the advice but let's get real. Sometimes we're gonna react to stuff and it would be nice to have some tools to help with it.

Currently sipping on some turmeric tea, thank you in advance to any advice.

[Zodi1993]

1 hour ago, Ali_D said:

Hi all! I just got the results of my biopsy and I officially truly belong on this forum. I'm celiac. Not sure how much information is relevant, I'm 28 years old, female, didn't feel any symptoms until about 3 years ago and don't seem to react immediately to eating gluten which is why it took so long to consider celiac as a cause.

I needed to gluten up for the tests to be effective and I'm struggling a lot with pain. It's not so bad on a daily level but it comes and goes in waves, and tonight I'm in a particularly bad spot with the pain and desperate for suggestions. My doctor said don't take pepto bismol, and so did a friend who's celiac. I think something about needing to let the symptoms run their course or something? I'm not sure, but if anyone here has some pro tips on reducing the pain I could really use the help. (Can I take T3s for this? Advil? Pepto? I'll even take a placebo at this point as long as it works!)

It's so frustrating to google for information because all the sites just say "strict gluten free diet!" Thanks for the advice but let's get real. Sometimes we're gonna react to stuff and it would be nice to have some tools to help with it.

Currently sipping on some turmeric tea, thank you in advance to any advice.

 

[GFinDC]

Screw your Dr. in this particular case IMHO.   Take the Pepto, and take some aspirin or some wine if it helps.  Also, lots of water, and soothing, easy to digest foods.  Peppermint Altoids or peppermint tea can help with stomach gas and pain.

Edited August 6, 2018 by GFinDC

[Zodi1993]

Hi Ali, 

Welcome to the forum. No on the Advil. Your friend and Doctor are correct that it needs to run its course. Mostly what helps my 24yr old Celiac daughter is her heating pad and lots of fluids. Water or tea and throw in a Gatorade or something similar. You will be basically flushing it out of your system.  If you can get up and move around maybe take a short walk just to distract you for a bit. Others might have some different remedies for you and if you haven’t already, check out the newbies thread. Hang in there as unfortunately this won’t be the last time you will be this miserable. Gluten has a tendency of sneaking in your life when you least expect it. Over time you will find out what helps you the best as everyone’s symptoms are different but this site if full of amazing people who can empathize and offer much love and support. 

 

[frieze]

hmm pepto has routinely bee recommended here.  it is not going to interfere with the disease process... just be aware that your stool will be black.

[Ali-D]

Thank you all for your help! I'll give the various suggestions a go and figure out what works best for me.

[squirmingitch]

Yes, it needs to run it's course. It will run it's course no matter what you do but there is no reason you must suffer any more than you have to. Until today, on this thread, I have not heard anyone ever say do not take Advil. The only reason not to take it is if Advil has a history of upsetting your tummy. That & I believe (but haven't checked lately) the gel Advil contains gluten. Just make sure whatever you're taking is gluten free. There is no reason you can't take Pepto Bismol. Do drink lots of water to help flush your system. Eat soft foods that will be easy to digest. 

[GFinDC]

There reasons other than gluten not to take Advil.  This thread has some links to info on kidney damage and ibuprofen.  It is always a good idea to check on possible side affects, even with commonly used medicines.

 

[Zodi1993]

This why I said no to Advil. My daughter is Celiac and was taking Advil for pain when I stumbled across this and she switched to Tylenol. 

 

Back to Dosage and Directions

I am allergic to gluten. Is it all right for me to take Advil® products?

Gluten is not added to any Advil® product during the manufacturing process. However, we cannot guarantee that minute amounts of gluten or gluten derivatives are not contained in raw materials obtained from various suppliers for our manufacturing process since the end product is not tested for gluten.

You should check with your doctor if you have any concerns about taking any Advil® product.

Edited August 7, 2018 by Zodi1993
Missing a word

[LilyR]

I was just going to ask what people do when they accidentally get glutened, to help the pain and discomfort while waiting it out, and I saw this thread, which probably has the same answers I was looking for.  Anyone know if Pepto has corn or soy product?  I hate pepto. The few times I took it when I was younger, I'd always throw up after.  Not sure if it's the medicine or the flavor.  So I hesitate trying it.  But I am in pain, and have so much to do this week, it is hard to be suffering with this right now. 

When you are recovering from being glutened, can some "safe" foods still bother you?  I hardly ate for a few days, and then was having mostly eggs. Those seem to be the most gentle on my stomach.  But I was starting to get really hungry and weak, so last night had a little steak.  That, apparently, was a big mistake.  Yet in the past being gluten-free, steak was an okay food for me.  Do you think it's just too harsh while I am healing from this accidental gluten issue? 

Meanwhile, I have no idea how I got glutened.  All I can think of is that it is time to get separate pans and utensils for myself.  I have been washing things super good, like three times if it was used for gluten (once with a gluten-used sponge, once with my hands, once with another sponge), and so far, the past year, that has worked fine.  But all I can think is I somehow didn't wash well enough this time and got cross contamination?  I have no idea. So, I have learned my lesson. I will have to just spend the money and find a space to store gluten-free pans and utensils from now on. My other thought was our grill.  We had a cookout and one person brought hot dogs that had cheese in them.  I have no idea if there was any gluten in them or not.  I know many burgers I've looked at that have flavors in them, like onions, or cheese, often have gluten fillers in them too.  But we have cooked on the grill since then, and I was okay.  My husband cleans it off really well. I asked him from now on if someone brings a food with gluten, use tin foil on the grill, or we need to tell people, sorry, nope, can't do it.  I don't think some people realize how painfully sick we get.  I don't have celiac, just the sensitivity, and from what I understand, with celiac it's even more dangerous for your health to get cross contamination.  But oh, those symptoms, so much suffering! I am having trouble even sleeping at night with it.  I forgot how awful it had been before getting the diagnose and going gluten-free. 

Anyone ever feel heavy with their breathing when they get the stomach distention and it causes your ribs to ache from the pressure, and your upper back to ache on and off?  I had a lung CT scan, a chest x-ray, and an EKG in January, and it all looked fine.  But it seems when I get the really bad gluten symptoms or have corn or soy product and get the stomach distention, my chest feels a little like when I get bronchitis.  Although allergies are really bad right now too, and I get really congested, and I think that is adding to it too.  Right now I could just scream, lol.  

What other soft foods do you all eat when recovering from a cross contamination incident?  I am really getting sick of eggs, even though I used to love them. I had just gotten a Stoneyfield yogurt to try last week (before I got accidentally glutened) at the store that is gluten free, but it has "natural ingredients" and I was going to try it to see if it bothered me or not.  I'd love to be able to have yogurt.  But now since this gluten flare up, I don't dare try it while in the middle of being so bothered right now.  It is hard when you can't have gluten. When so sick, my instinct is to have tea and toast or crackers.  I can't even have jello (I think that has corn in it?).  What do you eat when recovering until you stomach can handle more?  

I can't take Advil since I am allergic to ibruprophen.  Tylenlol never helps me at all, plus since I having gluten issues, it gives me a stomach ache (not sure why, maybe it has corn or soy in it).  I can take aspirin, but have not looked into a brand that is gluten, corn, and soy-free yet.  Sort of at wit's end today. I feel inflammation, like even up my esophagus and besides stomach issues, feel weak and just generally sick all over.  I just spent weeks researching prescription meds to get ones with no corn or soy (or gluten).  And before that, spent a while searching for vitamin supplements.  So I had taken a break before looking into aspirin (and then after that, I'll look into sinus and allergy meds).  It gets exhausting doing all this research. 

So, any other soft, gentle food suggestions?  What brands of tea do you use? I have seen some herbal teas that have "natural flavor" in the ingredients, and I know some of those can be iffy to us all here.  

 

[Dindy]

Gatorade is my best friend when I am glutened.  I drink the berry rain.  It helps with the pain and bloating really quick.  Be careful with tea's.  I have found several that have gluten in them, they use it to help the leaves not bunch together.  The same goes for coffee.  I buy the whole beans and grind them myself.  Like someone else said Advil gel caps have gluten in them also.  It is amazing how many prescription meds have gluten in them.  Lots of research all the time.  Hope you feel better soon.  I was glutened and not sure what got me but it has been a month and I am still having problems..

 

[cyclinglady]

Stew, soup and even cooked fruit — anything mushy.  I eat this for breakfast lunch and dinner.  Anything hurts to digest for a few weeks.  

As far as gluten is concerned.  Our house is gluten free, but even when it was mixed, I accepted no outside food that could contaminate my kitchen, including my grill.  Some people bring food still, but I graciously accept and later give it away.  I ask people to bring beverages, paper plates, etc. if they want to contribute.  My SIL is great.  She offers cash to cover food expenses since we often host family parties.  

I hope you feel better soon!  

Edited August 27, 2018 by cyclinglady

[Wheatwacked]

I use Original Alka Selzer for acute stomach upset. Then, Cream of Rice cereal to sooth and fill my belly while flushing out the contaminant. Walgreen's Nutritional shake to supplement vitamins and minerals. Baby carrots for fiber.

[Rhotitar]

Not sure if you found relief but when I get glutened I drink lots of water mixed with glutamine it is an amino acid that normally you wouldn’t need, but in times of stress/injury it is depleted. It also plays a role in maintaining the integrity of the instestinal mucuosa. Anyway it works for me in reducing the days I have symptoms. I also swear it helps me immediately reducing my pain symptoms. I am surprised that a lot of people in the forums don’t recommend or haven’t tried it. Also I took a couple of percosets for a migraine one time and it did nothing to alleviate the pain from ingesting gluten. I very much doubt anything would really help alleviate this type of pain but maybe steroids or being knocked out with powerful meds.

[PointWellTaken]

On 8/27/2018 at 12:44 PM, LilyR said:

I was just going to ask what people do when they accidentally get glutened, to help the pain and discomfort while waiting it out, and I saw this thread, which probably has the same answers I was looking for.  Anyone know if Pepto has corn or soy product?  I hate pepto. The few times I took it when I was younger, I'd always throw up after.  Not sure if it's the medicine or the flavor.  So I hesitate trying it.  But I am in pain, and have so much to do this week, it is hard to be suffering with this right now. 

When you are recovering from being glutened, can some "safe" foods still bother you?  I hardly ate for a few days, and then was having mostly eggs. Those seem to be the most gentle on my stomach.  But I was starting to get really hungry and weak, so last night had a little steak.  That, apparently, was a big mistake.  Yet in the past being gluten-free, steak was an okay food for me.  Do you think it's just too harsh while I am healing from this accidental gluten issue? 

Meanwhile, I have no idea how I got glutened.  All I can think of is that it is time to get separate pans and utensils for myself.  I have been washing things super good, like three times if it was used for gluten (once with a gluten-used sponge, once with my hands, once with another sponge), and so far, the past year, that has worked fine.  But all I can think is I somehow didn't wash well enough this time and got cross contamination?  I have no idea. So, I have learned my lesson. I will have to just spend the money and find a space to store gluten-free pans and utensils from now on. My other thought was our grill.  We had a cookout and one person brought hot dogs that had cheese in them.  I have no idea if there was any gluten in them or not.  I know many burgers I've looked at that have flavors in them, like onions, or cheese, often have gluten fillers in them too.  But we have cooked on the grill since then, and I was okay.  My husband cleans it off really well. I asked him from now on if someone brings a food with gluten, use tin foil on the grill, or we need to tell people, sorry, nope, can't do it.  I don't think some people realize how painfully sick we get.  I don't have celiac, just the sensitivity, and from what I understand, with celiac it's even more dangerous for your health to get cross contamination.  But oh, those symptoms, so much suffering! I am having trouble even sleeping at night with it.  I forgot how awful it had been before getting the diagnose and going gluten-free. 

Anyone ever feel heavy with their breathing when they get the stomach distention and it causes your ribs to ache from the pressure, and your upper back to ache on and off?  I had a lung CT scan, a chest x-ray, and an EKG in January, and it all looked fine.  But it seems when I get the really bad gluten symptoms or have corn or soy product and get the stomach distention, my chest feels a little like when I get bronchitis.  Although allergies are really bad right now too, and I get really congested, and I think that is adding to it too.  Right now I could just scream, lol.  

What other soft foods do you all eat when recovering from a cross contamination incident?  I am really getting sick of eggs, even though I used to love them. I had just gotten a Stoneyfield yogurt to try last week (before I got accidentally glutened) at the store that is gluten free, but it has "natural ingredients" and I was going to try it to see if it bothered me or not.  I'd love to be able to have yogurt.  But now since this gluten flare up, I don't dare try it while in the middle of being so bothered right now.  It is hard when you can't have gluten. When so sick, my instinct is to have tea and toast or crackers.  I can't even have jello (I think that has corn in it?).  What do you eat when recovering until you stomach can handle more?  

I can't take Advil since I am allergic to ibruprophen.  Tylenlol never helps me at all, plus since I having gluten issues, it gives me a stomach ache (not sure why, maybe it has corn or soy in it).  I can take aspirin, but have not looked into a brand that is gluten, corn, and soy-free yet.  Sort of at wit's end today. I feel inflammation, like even up my esophagus and besides stomach issues, feel weak and just generally sick all over.  I just spent weeks researching prescription meds to get ones with no corn or soy (or gluten).  And before that, spent a while searching for vitamin supplements.  So I had taken a break before looking into aspirin (and then after that, I'll look into sinus and allergy meds).  It gets exhausting doing all this research. 

So, any other soft, gentle food suggestions?  What brands of tea do you use? I have seen some herbal teas that have "natural flavor" in the ingredients, and I know some of those can be iffy to us all here.  

 

I don't think you should be using sponges for cleaning, based upon what the dietician at the GI doc said. She said that they can be contaminated and since there are so many cracks or holes in sponges, they were nearly impossible to clean, even in the dishwasher.  So, I've tossed them and use Handiwipes or Blue Paper Towels instead. The paper towels can be laundered with your kitchen towels and last longer than you'd expect.

[kareng]

6 hours ago, PointWellTaken said:

I don't think you should be using sponges for cleaning, based upon what the dietician at the GI doc said. She said that they can be contaminated and since there are so many cracks or holes in sponges, they were nearly impossible to clean, even in the dishwasher.  So, I've tossed them and use Handiwipes or Blue Paper Towels instead. The paper towels can be laundered with your kitchen towels and last longer than you'd expect.

We just use 2 different colored sponges - the blue color Is for the few gluten things my husband uses and other colors are gluten-free ( most of the kitchen)