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Will I Ever Stop Hurting?

rjne2nd

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rjne2nd Rookie
rjne2nd
Posted

I am a new celiac diagnosis.. been gluten free for about 2 weeks.. I am 47 and it 17 years to get to this point.. they thought I had some sort of rheumatoid condition for a while test were negative but had lots of joint and muscular pain. Had a postitive biopsy 17 years ago the doctors poo pood it and about 3 weeks ago had another postive biopsy with a probable but not 100% certain genetic test for celiac.. the GI Dr encouraged me to go on a gluten free diet! I have tried very hard to go gluten-free but my symptoms are not gone.. get really sick(cramping abd pain.. very painful bloating) when I accidently get gluten! Will I ever stop hurting? Will going on this diet cause my muscle pain to get better?

Any advice would be so encouraging! I need help believing going to all this trouble will help!

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confusedks Enthusiast
confusedks
Posted

I would say to stick it out. Some people say it can take up to 6 months! So, hang in there. Also have you made sure to get rid of nonstick pots/pans, plastic strainer, plastic cooking utensils? You may still be getting glutened. Also, a lot of people go on a rice chicken fruits and vegetables diet for awhile until they feel better. Finally, dairy may be problematic for you.

Kassandra

rjne2nd Rookie
rjne2nd
Posted
  • Author
I would say to stick it out. Some people say it can take up to 6 months! So, hang in there. Also have you made sure to get rid of nonstick pots/pans, plastic strainer, plastic cooking utensils? You may still be getting glutened. Also, a lot of people go on a rice chicken fruits and vegetables diet for awhile until they feel better. Finally, dairy may be problematic for you.

Kassandra

Thank you so much for the input! I cant tell you how helpful it is!

Rhonda jane :)

sunshinen Apprentice
sunshinen
Posted

you might also want to cut lactose out and see if that helps. for the first 6 months lactose caused a lot of stomach pain and bloating for me. still does if i have had a few accidental glutenings in a row.

livvie2sha Newbie
livvie2sha
Posted

I'm confused if I may jump in this conversation as to why you said :

nonstick pots/pans, plastic strainer, plastic cooking utensils? You may still be getting glutened.

may I ask how , I never heard of this before ??? sorry to butt in a post ...

grey Explorer
grey
Posted

I'm still struggling with healing, but it has gotten better since I was dx'd at the end of May. I didn't notice much improvement for the first month. Cutting dairy and soy, and avoiding raw veg. and most raw fruits has helped a lot. Your intestine needs a break! And, while some people have a near-instant change, more take time. You just started-it took years to damage yourself - give yourself some time to heal.

Also, have you been checked for vitamin/mineral malabsorption? Getting my levels up helped, as did cutting out some medications (on doctor's orders and under observation). It turned out I wasn't absorbing some meds right because of the celiac so they were damaging other parts of my system. I also had one med I was taking that had gluten in it, and getting rid of that definately helped!

Btw, getting rid of nonstick, plastic and wood from pre-gluten-free days is important. If there are scratches in the nonstick, for example, it's impossible to clean the pan well enough to get rid of the gluten (it's pretty sticky, too). Metal and glass seem to clean better.

good luck

tom Contributor
tom
Posted
you might also want to cut lactose out and see if that helps. for the first 6 months lactose caused a lot of stomach pain and bloating for me. still does if i have had a few accidental glutenings in a row.

Definitely cut out dairy for awhile to see what happens.

With lactose, the issue is that the corresponding enzyme, lactase, is secreted from the tips of the villi. Every celiac w/ significant damage (flattened villi) will have lactose problems. As the villi repair, it'll be less and less a problem.

BUT, there's another milk issue too. The milk protein, casein, can be a problem due to what's called 'molecular mimicry'.

Parts of the casein molecule are shaped like a gluten molecule.

When ppl say Gluten-free Casein-free diet, it's gluten and casein.

I do wish I knew whether the casein side of the milk issues can go away.

Somehow things like non-dairy creamer CAN have casein, AND have the fine print admit "milk derivative", yet the big letters still say NON-DAIRY!!

Makes so little sense.

Anyway, in place of milk for cereal I use a ricemilk by WestSoy or a hazelnut milk by Pacific.

Many celiacs have problems w/ soy, btw.

Good Luck!

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grey Explorer
grey
Posted

On replacement milks - I love the Pacific Almond milk. I've used in place of milk in smoothies and once in cooking and it did fine. And it tastes great on cereals.

Be careful with replacement milks - a lot of them have gluten and soy, even if they're rice milk, for ex. and it varies by brand. Really check the labels.

Definitely cut out dairy for awhile to see what happens.

With lactose, the issue is that the corresponding enzyme, lactase, is secreted from the tips of the villi. Every celiac w/ significant damage (flattened villi) will have lactose problems. As the villi repair, it'll be less and less a problem.

BUT, there's another milk issue too. The milk protein, casein, can be a problem due to what's called 'molecular mimicry'.

Parts of the casein molecule are shaped like a gluten molecule.

When ppl say Gluten-free Casein-free diet, it's gluten and casein.

I do wish I knew whether the casein side of the milk issues can go away.

Somehow things like non-dairy creamer CAN have casein, AND have the fine print admit "milk derivative", yet the big letters still say NON-DAIRY!!

Makes so little sense.

Anyway, in place of milk for cereal I use a ricemilk by WestSoy or a hazelnut milk by Pacific.

Many celiacs have problems w/ soy, btw.

Good Luck!

F.deSales Rookie
F.deSales
Posted
I am a new celiac diagnosis.. been gluten free for about 2 weeks.. I am 47 and it 17 years to get to this point.. they thought I had some sort of rheumatoid condition for a while test were negative but had lots of joint and muscular pain. Had a postitive biopsy 17 years ago the doctors poo pood it and about 3 weeks ago had another postive biopsy with a probable but not 100% certain genetic test for celiac.. the GI Dr encouraged me to go on a gluten free diet! I have tried very hard to go gluten-free but my symptoms are not gone.. get really sick(cramping abd pain.. very painful bloating) when I accidently get gluten! Will I ever stop hurting? Will going on this diet cause my muscle pain to get better?

Any advice would be so encouraging! I need help believing going to all this trouble will help!

Hi I am also new to all of this but I am not new to arthritis. I have rheumatoid (with a false negative), reactive, and osteoporosis for many years! There is a connection to RA and celiac. Just because your blood work came back neg does not mean you don't have it or some form of it. You need to go on a Gluten-free Casein-free diet for the rest of your life. I would recommend staying away from MSG, preservatives ... have you had an allergy test lately? Food Allergies do cause joint and muscular pain! If you have a form of arthritis, the pain could mean joint damage. I don't mean to scare you but I don't want you to suffer as much as I am. I can not take any medications that have sulfa/sulfates which is just about all meds ... so I have to eat as pure as possible and now with having Ceilac I have to be EXTRA careful. I have been trying to be gluten-free for a month now. But am still in pain. I have to go back to get more tests and they say I will have to eat gluten again before the do the biopsy again. I have complete Iga deficiency which makes all this a challenge.

If you live in the Northern Virginia area I know of a GREAT Dr. that will help you out. She saved my life.

It will help. When I started eating pure (before the Celiac) I was doing better. I was able to cut down on my pain medication.

Do you have any neurological symptoms?

Hang in there. There is a lot of help here that docs might not give.

mftnchn Explorer
mftnchn
Posted

Hi, you are still very early in the healing process, so you'll need to be patient! :) Early on there is such a challenge with getting gluten when we don't know it. Many people are helped as well by eliminating gluten in personal products. Focus energy on making sure you are totally gluten free, and enjoy the moments when you are better, they will get longer if you stick with it!

Eat very simple foods seems to help and not using baked things at first, are ideas I have read here on the forum. If it doesn't get better, you may need to eliminate some other foods at least for awhile.

emcmaster Collaborator
emcmaster
Posted

Severe abdominal bloating/pain are my symptoms, too. For a while after going gluten-free, I couldn't digest fats or many vegetables well either, so I avoided them. Now I'm ok with them as long as I don't get glutened.

I agree with others - go down to the simplest diet possible until your pain goes away and then start adding things one at a time until you have a feel for what you can handle right now.

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