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Ongoing Pain Despite gluten-free Diet

zamm0

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zamm0 Apprentice
zamm0
Posted

OK, first post here and was diagnosed Celiac 2 weeks ago :-(

Can you still get pain (in the small intestine area) even though you've gone gluten free i.e. does the inflammation/damage you've built up IN THE PAST keep giving pain sometimes? Or is it more likely I'm not being vigilant enough and it really is to do with CURRENT gluten ingestion?

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kittty Contributor
kittty
Posted

OK, first post here and was diagnosed Celiac 2 weeks ago :-(

Can you still get pain (in the small intestine area) even though you've gone gluten free i.e. does the inflammation/damage you've built up IN THE PAST keep giving pain sometimes? Or is it more likely I'm not being vigilant enough and it really is to do with CURRENT gluten ingestion?

I'm going to assume that you've also been gluten free for only two weeks since your diagnosis. It can take many months to see significant improvement, and for some people it takes years. It takes time for the damage to repair itself, and in the meantime you may start to feel slightly better, and some symptoms will probably clear up faster than others. I've been gluten free for almost six months, and still have some lingering issues.

It's also possible that you're still making rookie mistakes. It takes time to get used to the diet, and find all of the hidden sources of gluten. This forum is a great resource to find help though. It has been indispensable for me!

taxlady23 Newbie
taxlady23
Posted

I'm going to assume that you've also been gluten free for only two weeks since your diagnosis. It can take many months to see significant improvement, and for some people it takes years. It takes time for the damage to repair itself, and in the meantime you may start to feel slightly better, and some symptoms will probably clear up faster than others. I've been gluten free for almost six months, and still have some lingering issues.

It's also possible that you're still making rookie mistakes. It takes time to get used to the diet, and find all of the hidden sources of gluten. This forum is a great resource to find help though. It has been indispensable for me!

My son 17, has been gluten free for over a year and a half now. His pain and cramping only went away a few months ago. It takes time to heal. Are you taking any natural supplements to help the healing process?

zamm0 Apprentice
zamm0
Posted
  • Author

My son 17, has been gluten free for over a year and a half now. His pain and cramping only went away a few months ago. It takes time to heal. Are you taking any natural supplements to help the healing process?

Thanks to the above for taking the time to reply. I've just started taking a probiotic tablet twice a day and try to have probiotic yoghurt several times a week too. Also taking some iron to get my store levels up a bit but obviously that's not directly related to the healing. Let me know what else I can do....thanks,

Paul.

zamm0 Apprentice
zamm0
Posted
  • Author

I'm going to assume that you've also been gluten free for only two weeks since your diagnosis. It can take many months to see significant improvement, and for some people it takes years. It takes time for the damage to repair itself, and in the meantime you may start to feel slightly better, and some symptoms will probably clear up faster than others. I've been gluten free for almost six months, and still have some lingering issues.

It's also possible that you're still making rookie mistakes. It takes time to get used to the diet, and find all of the hidden sources of gluten. This forum is a great resource to find help though. It has been indispensable for me!

Until now I've been relying on a) "free from" sections of supermarkets, which are usually (but not always) a little pricey b ) basic knowledge of simple foodstuffs that won't contain gluten because they are pure c) the coeliac (spelling?) society food directory list.

What is quite curious is that I seem to get pain every other day or so but not always in the same area - whereas before it *was* mainly to the left of the navel about level with it, that pain has largely gone away but has been replaced with a more dull pain either above or below the navel (but on both sides). I did read that below can be to do with lactose intolerance i.e. dairy, which I have not cut out yet. That said, today I didn't have cereal and have only had milk in coffee/tea and that pain is not really there today but some pain is now above. All very confusing!!!

nvsmom Community Regular
nvsmom
Posted

I occasionally get crampy when I eat some gluten-free foods; I think it's more to do with the fact that it's junk gluten-free food and highly processed than anything. It's often a good idea not to replace gluten foods slice per slice with gluten-free foods. gluten-free foods are often higher in sugars and very processed; the regular foods are actually more nutritious. For example, I used to buy 4 loaves of bread a week for my family of five; we are now all gluten-free and I buy 1 Udi's loaf and a bag of their bagels and that's it. Our bread was cut by half.

I have issues with milk and had stomachaches with them too. It was different than the gluten stomachaches (which you'll probably know as a fact if you ever accidently gluten yourself). I recommend almond or coconut milks as a substitute for coffee and tea; they're not bad and the sweetened ones are quite tastey. Some people do okay if they have lactaid with their milk too. Anyways,f your pains go after eliminating milk, you'll have your answer.

Good luck. :)

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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