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stomach pain

MADMOM
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MADMOM Community Regular
MADMOM
Posted

So i’ve been  gluten free 7 weeks - i was diagnosed via endoscopy and blood test - i’ve been reading all labels eating at home only and switching things around - trial and error with regards to lactose free as opposed to dairy free - to see what works - my GI said my villi was mildly blunted but idk!  so my question to all the post recovery celiacs is the stomach soreness and pinchy feeling ?  does it stay with you awhile even though you are not eating gluten?  i don’t think i’ve been cross contaminated to date because i haven’t had any diarrhea or vomiting or headaches but my stomach on both side of ribs continue to feel sore on some days like i just worked out and slightly pinchy on others - just want to know if this is normal healing process 

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Scott Adams Grand Master
Scott Adams
Posted

Full recovery can take up to 2 years, but usually happens faster if you're 100% gluten-free. Having villi damage can also cause leaky gut, and make you have additional, usually temporary, food intolerance issues. You may need to do an elimination diet where you exclude certain foods for a few weeks, then keep a journal when you add them back.

knitty kitty Grand Master
knitty kitty
Posted

MadMom,

Try the Autoimmune Paleo Protocol diet.  Dr. Sarah Ballantyne, a Celiac herself, has written a wonderful book....

https://www.thepaleomom.com/books/the-paleo-approach/

This book has lots of helpful information.  Even if gluten free, the inflammation of Celiac lingers.   It explains what's happening to your body during inflammation and what to do to calm the inflammation. 

The Autoimmune diet has been scientifically proven to help heal the intestines.  I have used this approach and I saw results quickly because I didn't have to do so much trial and error which often set me back weeks.  I recommend it highly.  It works!  And it is comforting having such a thorough resource close by.

Mildly blunted villi means that the tips of the villi have been destroyed and can no longer make lactase, an enzyme that digests lactose, the sugar in milk.  So skip milk for six months or so.  That undigested milk sugar lactose is going to be digested by bacteria in your intestines further down. Those bacteria are going to make a lot of gas as a byproduct.  You may feel bloated.  

When your intestines bloat, your abdomen expands.  And your ribcage can expand as well.  There are four "floating" ribs attached to other ribs by cartilage.  This cartilage can flex allowing for more room for swollen intestines (or big turkey dinners at Thanksgiving).  This flexing can cause inflammation in the cartilage.  It's called costochondritis.  

The stomach and the first part of the small intestine run across your body up under your ribs near your diaphragm.  (Good diagrams in that book to show all this.)  So the swelling from inflammation in the small intestine is pushing out those floating ribs.  

You're going to be fine.  Remember to breathe.  Deep breaths.  Abdominal breathing.  Your tummy should rise and fall.  The diaphragm acts as a plunger, massaging the intestines, like churning butter, helping digestion and peristalsis.  If your shoulders or upper chest is moving, you're not breathing abdominally.  

This is what I did:

I take 300 mg of thiamine HCl (100 mg, three times a day).  Work up slowly (first day take 100 mg, second day take 100 mg twice, third day take 100 mg thrice, 300 mg or more can be taken thereafter incrementally increasing dosage).  Thiamine is cheap, nontoxic, water soluble, perfectly safe.  

I take 1000 mg tryptophan and 200 mg theanine which have been shown scientifically to help heal the intestines.

I take magnesium glycinate.  (Thiamine and magnesium work together.)  And a B Complex supplement.  (All the eight essential B vitamins work together.)  

Vitamin D is frequently low in newly diagnosed Celiacs.  Vitamin D helps reduce inflammation and regulates the immune system, so make sure you correct a deficiency there.  

Hope this helps!

 

MADMOM Community Regular
MADMOM
Posted
  • Author
2 hours ago, Scott Adams said:

Full recovery can take up to 2 years, but usually happens faster if you're 100% gluten-free. Having villi damage can also cause leaky gut, and make you have additional, usually temporary, food intolerance issues. You may need to do an elimination diet where you exclude certain foods for a few weeks, then keep a journal when you add them back.

what is a leaky gut exactly?  i had endoscopy prior to my diagnosis so i’m still very early in recovery.  i don’t expect my physical pain to go away that fast but was curious on how long it took people who are already recovered!  i don’t go for bloodwork till april - 3 months into this journey / i wanted to inquire as to how many points ones levels can drop 

MADMOM Community Regular
MADMOM
Posted
  • Author
13 minutes ago, knitty kitty said:

MadMom,

Try the Autoimmune Paleo Protocol diet.  Dr. Sarah Ballantyne, a Celiac herself, has written a wonderful book....

https://www.thepaleomom.com/books/the-paleo-approach/

This book has lots of helpful information.  Even if gluten free, the inflammation of Celiac lingers.   It explains what's happening to your body during inflammation and what to do to calm the inflammation. 

The Autoimmune diet has been scientifically proven to help heal the intestines.  I have used this approach and I saw results quickly because I didn't have to do so much trial and error which often set me back weeks.  I recommend it highly.  It works!  And it is comforting having such a thorough resource close by.

Mildly blunted villi means that the tips of the villi have been destroyed and can no longer make lactase, an enzyme that digests lactose, the sugar in milk.  So skip milk for six months or so.  That undigested milk sugar lactose is going to be digested by bacteria in your intestines further down. Those bacteria are going to make a lot of gas as a byproduct.  You may feel bloated.  

When your intestines bloat, your abdomen expands.  And your ribcage can expand as well.  There are four "floating" ribs attached to other ribs by cartilage.  This cartilage can flex allowing for more room for swollen intestines (or big turkey dinners at Thanksgiving).  This flexing can cause inflammation in the cartilage.  It's called costochondritis.  

The stomach and the first part of the small intestine run across your body up under your ribs near your diaphragm.  (Good diagrams in that book to show all this.)  So the swelling from inflammation in the small intestine is pushing out those floating ribs.  

You're going to be fine.  Remember to breathe.  Deep breaths.  Abdominal breathing.  Your tummy should rise and fall.  The diaphragm acts as a plunger, massaging the intestines, like churning butter, helping digestion and peristalsis.  If your shoulders or upper chest is moving, you're not breathing abdominally.  

This is what I did:

I take 300 mg of thiamine HCl (100 mg, three times a day).  Work up slowly (first day take 100 mg, second day take 100 mg twice, third day take 100 mg thrice, 300 mg or more can be taken thereafter incrementally increasing dosage).  Thiamine is cheap, nontoxic, water soluble, perfectly safe.  

I take 1000 mg tryptophan and 200 mg theanine which have been shown scientifically to help heal the intestines.

I take magnesium glycinate.  (Thiamine and magnesium work together.)  And a B Complex supplement.  (All the eight essential B vitamins work together.)  

Vitamin D is frequently low in newly diagnosed Celiacs.  Vitamin D helps reduce inflammation and regulates the immune system, so make sure you correct a deficiency there.  

Hope this helps!

 

ty so much is it ok to have lactose free milk and yogurt? i’ve been doing that for several weeks with no issues.  i don’t have any gas or diarrhea or any other issues so far other than the soreness and pinchiness i felt at the beginning - some days i’m totally fine - is lactose free ok or should i just not have any dairy at all?  it’s pretty hard but if i have to i will 

knitty kitty Grand Master
knitty kitty
Posted
1 hour ago, MADMOM said:

ty so much is it ok to have lactose free milk and yogurt? i’ve been doing that for several weeks with no issues.  i don’t have any gas or diarrhea or any other issues so far other than the soreness and pinchiness i felt at the beginning - some days i’m totally fine - is lactose free ok or should i just not have any dairy at all?  it’s pretty hard but if i have to i will 

Read this article....

Lactose (milk sugar) and casein (milk protein) can both cause problems.  Like the study says, casein can keep your tTg levels high.  

No dairy at all would be best.  

 

CMCM Rising Star
CMCM
Posted
1 hour ago, knitty kitty said:

Read this article....

Lactose (milk sugar) and casein (milk protein) can both cause problems.  Like the study says, casein can keep your tTg levels high.  

No dairy at all would be best.  

 

I've had terrible dairy issues my whole life.  My mother told me as a baby when she stopped breastfeeding (I don't think she breastsfed me long) and gave me cow's milk, I couldn't tolerate it.  My dad had to walk around with me all night because I wouldn't stop crying.  Eventually I was able to tolerate goat's milk, but I don't know more than that or for how long I drank it.  I do know that for my entire life I didn't like milk, ice cream, cheese etc.  I had some of it here and there, but didn't want to eat it much because I knew I would suffer digestive consequences from it.  

When I got a celiac test from Enterolab, they did a casein sensitivity test as well and told me I should not have casein either as the test showed a strong igA response.  I'm not sure how reliable Enterolab's stool test methods are  (they have never published their findings that I know of, although some sort of publication was supposedly coming out in 2006 when I had my test done. I think nothing further has come of that.  I've tried lactaid pills, but they don't help me, and I suppose if I were casein intolerant lactaid wouldn't help.  In 2006 I went gluten and dairy free for about 9 months and I definitely felt better.  After that, I seemed to manage dairy better but I always kept dairy infrequent because too much or too often I did feel it like before. Whether it's casein or lactose intolerance, or both, I have no idea.  

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Scott Adams Grand Master
Scott Adams
Posted

@knitty kitty has given you some great ideas, and I recommend that you try out some of the things she's suggested. Vitamins and mineral deficiencies are very common in celiacs, as are additional food sensitivities. 

MADMOM Community Regular
MADMOM
Posted
  • Author

yes i would like to ask my GI about the thiamine - My b12 levels and vitamin D levels were normal when i had blood tests done in january to get the dx - my iron was always low and i’ve been taking iron with vitamin c in it for better absorption and wondering if it’s working - my bowels are not green - usually when i take a different brand of iron alone they are - could this mean that i’m not absorbing it or that i am!🙏🏻

knitty kitty Grand Master
knitty kitty
Posted

Your doctor will have to test your iron levels to determine if you're absorbing iron.  

I took an enterically coated iron supplement that didn't turn my poop green like previously taken iron supplements.  So, maybe it's working.  

I also took copper.  There's a delicate balance between copper and iron.  But taking copper on alternating days with iron helped me.  My hair has grown back thicker and darker in addition to feeling better.

I'm a big fan of getting Vitamin D levels up above "normal" levels (40nmol).  I read a study that found Vitamin D works better if the levels are above 80 nmol, which is the level found in indigenous Pacific Islanders with traditional dress (lots of skin exposed to the sun).  While I don't live on an island in the Pacific now, I did notice health changes and lower Vitamin D levels after moving to a much more northern latitude.  The study found Vitamin D has additional benefits and functions at higher levels in the body.  

This is what has worked for me.  Check with your doctor.  

 

6 hours ago, MADMOM said:

yes i would like to ask my GI about the thiamine - My b12 levels and vitamin D levels were normal when i had blood tests done in january to get the dx - my iron was always low and i’ve been taking iron with vitamin c in it for better absorption and wondering if it’s working - my bowels are not green - usually when i take a different brand of iron alone they are - could this mean that i’m not absorbing it or that i am!🙏🏻

 

MADMOM Community Regular
MADMOM
Posted
  • Author

ty so much for all this inform latin and knowledge - i will be looking into all these vitamins and things you suggested!  you put my mind at ease ty so much 

knitty kitty Grand Master
knitty kitty
Posted

You're very welcome.  

I'm well blessed and thankful I can share what I've learned on my Celiac journey.

Keep us posted on your progress!  

MADMOM Community Regular
MADMOM
Posted
  • Author

how long did your healing process take?

knitty kitty Grand Master
knitty kitty
Posted

Once I went on the AIP diet, I felt so much better within days.  Removing inflammatory foods was like going on a vacation for my poor intestines!

I had suffered with Celiac symptoms for as long as I can remember, but because the whole family (it's genetic!) had similar symptoms, they were brushed off as "normal."  By midlife, I had developed a cascade of health problems. Doctors threw pharmaceuticals at me.  I took them like a good patient, but the failing health cascade continued. 

Eventually the doctors wrote me off as a crazy hypochondriac person when their pharmaceutical bandaids failed or made me worse...and I started researching.....

Physically healing, resolving those things for which I was given medications, took a couple of years.  I've corrected vitamin deficiencies.  I no longer have blood pressure problems.  I control my Type Two Diabetes with diet. 

So healing is possible, and that rather quickly, when the body is given the building blocks (vitamins and minerals and essential nutrients) and care it needs.  

Best wishes for you on your journey.

MADMOM Community Regular
MADMOM
Posted
  • Author

omg!  so inspiring - i am hoping to be able to say the same - your advice is so well received and appreciated and i will continue to ask questions if you don’t mind - as this journey to healing continues ❤️

knitty kitty Grand Master
knitty kitty
Posted

You keep asking questions, MadMom!

I love questions because I love learning.  In my culture, sharing knowledge is equivalent to giving a gift.  

Sharing what I've learned so others can experience a better life is my gift to all readers.   

MADMOM Community Regular
MADMOM
Posted
  • Author

how long have you been diagnosed? And how long did your healing take in total?  Did you start the AIP diet right away?  

MADMOM Community Regular
MADMOM
Posted
  • Author
26 minutes ago, knitty kitty said:

You keep asking questions, MadMom!

I love questions because I love learning.  In my culture, sharing knowledge is equivalent to giving a gift.  

Sharing what I've learned so others can experience a better life is my gift to all readers.   

reading on the AIP diet it seems it’s not based on gluten free foods but regular foods in general so my question is do you still avoid breads and things like nuts and rice even though as a celiac,you are eating gluten free versions of these foods?  basically is there anything you did not remove that the diet recommends you do? 

knitty kitty Grand Master
knitty kitty
Posted
(edited)
2 hours ago, MADMOM said:

how long have you been diagnosed? And how long did your healing take in total?  Did you start the AIP diet right away?  

Eventually, I got a genetic test done which says I've got HLA DBQ 2 and 8 genes.  One codes for Dermatitis Herpetiformis on the outside and the other for the gastrointestinal rollercoaster ride on the inside.   😺

Several times, I had asked for the Celiac panels, antibody blood tests, which came back negative, surprisingly, considering my symptoms.  It's only been recently that it was found that PPI'S and Nsaids affect the amounts of antibodies present in the blood resulting in false negatives. 

Read Scott's article...

I had asked the gastro doctor to biopsy for Celiac Disease, but was told everything looked fine, although I had some damaged spots in my stomach but "they weren't cancerous so don't worry about it."   Damage to the intestines can be microscopic or patchy and can be missed easily.   It helps if your gastro doctor is knowledgeable about and experienced with Celiac Disease.  

It was a very long bumpy road.  I got very frustrated with my doctors.  I listened to my gut (pun intended) and went on the AIP diet. I started correcting my vitamin deficiencies.  "Two steps forward, one step back" progress...but eventually things started coming together.  I feel like I'm still healing.  

 

2 hours ago, MADMOM said:

reading on the AIP diet it seems it’s not based on gluten free foods but regular foods in general so my question is do you still avoid breads and things like nuts and rice even though as a celiac,you are eating gluten free versions of these foods?  basically is there anything you did not remove that the diet recommends you do? 

I chose low histamine foods allowed on the AIP diet at first.  That really helped get the inflammation down.  (It's in that book.)  I stuck to the diet like glue and the results came.  

Over time, I've been able to expand my diet.  I've added in some rice occasionally, walnuts and sunflower seeds. 

I do not buy gluten free facsimile foods because I can't tolerate them well.   I can't tolerate corn which seems to be in most of them.  Also gluten free facsimile foods often contain microbial transglutaminase (aka "meat glue") to improve texture and flavor but it is as damaging to the intestines as the tissue transglutaminase you produce in your body when exposed to gluten.  It's also found in dairy products, nut milk products, gluten containing baked goods, and formed meat products (luncheon meats, sausage, chicken nuggets, etc.). 

I shop on the outside aisles, fresh veggies, meat,  occasionally eggs, some fruits.  

I did try the new gluten free Oreos!  They're very good.  But I limit the amount and frequency.  So far no problem! 

 

 

Edited by knitty kitty
Typo
Posterboy Mentor
Posterboy
Posted

To All,

I just wanted to add this nice FAQs on Stool Color since it has come  up during the discussion....

Most times' it harmless....but their are few colors you should worry about it...

It explains it well....in a nice overview style...

https://www.mayoclinic.org/stool-color/expert-answers/faq-20058080

I hope it is helpful but it is not medical advice.

Posterboy,

knitty kitty Grand Master
knitty kitty
Posted

It's a no go on the Oreos.   😿 

I've broken out in a rash...

Blasted corn starch.

 

CMCM Rising Star
CMCM
Posted
1 hour ago, knitty kitty said:

It's a no go on the Oreos.   😿 

I've broken out in a rash...

Blasted corn starch.

 

Pretty much ALL of the gluten free baked goods (cookies, cake mixes, all that stuff) give me digestive trouble.  Since I am also very sensitive to corn AND probably a great many of the starches used to create gluten-free baked goods (tapioca starch for sure), I figure that's why I don't do well with them.  These things are as bad on my system as gluten goods. I didn't get a rash with the oreos, but I didn't feel well after eating them, but what else is new for me?

Scott Adams Grand Master
Scott Adams
Posted
10 hours ago, knitty kitty said:

It's a no go on the Oreos.   😿 

I've broken out in a rash...

Blasted corn starch.

 

A blessing in disguise? 😅

knitty kitty Grand Master
knitty kitty
Posted

Indubitably!  😸

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Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Gluten free thyroid medications

      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
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