Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Casein? Lactose?


mazzy

Recommended Posts

mazzy Newbie

i've been gluten free for over a year & a half now. i didn't have symptoms every time i ate gluten but when i did, i had extreme distention, increased heart rate, a pulse in my belly, nausea & extreme thirst. my reactions have gotten progressively worse to the point where air borne gluten effects my breathing & gives me chest pain. it turns out i had a severe issue with gluten! i came back negative for celiac through blood & by the time i got a stomach biopsy, i was 7 months gluten free.

since i've given up gluten, i've lost 100 lbs in a year. i've gone as low as 93 lbs eating 2 pints of haagen dazs a day in addition to everything else i was eating. i VERY slowly gained some weight. i have late stage lyme disease & i cannot tolerate meat. it just sits in my stomach. the only meat i can tolerate is nitrate free bacon. i have no clue why. my GI couldn't give me an answer for it either.

i've lost 14 lbs in the last month... i'm now 102 lbs & i'm quickly losing again. i experience chest pain & shortness of breath daily. brain fog, stiffness, extreme exhaustion with insomnia, no appetite (i do force myself to eat) & nausea almost all the time. last month i went through a very scary week of increased heart rate with horrendous vertigo. turning my head in bed was enough to make the room spin. prior to that, it was a week of migraines.

i realize that a lot of these symptoms could simply be lyme but after 2 ER visits this weekend, i really don't think it's related. i went in because i had oily stool so i definitely know i have a malabsorption problem although i suspected it all along. i also had intense pain in my left side so i was afraid it was my gallbladder or pancreas. that coupled with being extremely dizzy & VERY pale lately was enough to scare me.

they ran every blood test you can think of. they first checked for cancer then leukemia even anemia. the second visit they checked all my heart functions because i was complaining of numbness in my arm & shoulder - another symptom i have every day. this coupled with the new symptoms made me worry i was about to have a heart attack. they did a ton of blood work & there's nothing wrong with my heart. x-rays & ct scan.

the gastrografin they gave me ended up giving me diarrhea for 24 hours so i didn't eat anything. i finally had some rice, cheese, avocado, olives & lettuce with baked tortilla chips. i started to feel sick almost immediately. then i realized i was starting to experience the symptoms i had when i was still eating gluten. increased heart rate, pulse in the belly, extreme thirst & nausea.

i'm coming to you guys because this is brand new to me. does it seem like i have a casein/lactose issue? would this cause me to lose all this weight?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Razzle Dazzle Brazell Enthusiast

i've been gluten free for over a year & a half now. i didn't have symptoms every time i ate gluten but when i did, i had extreme distention, increased heart rate, a pulse in my belly, nausea & extreme thirst. my reactions have gotten progressively worse to the point where air borne gluten effects my breathing & gives me chest pain. it turns out i had a severe issue with gluten! i came back negative for celiac through blood & by the time i got a stomach biopsy, i was 7 months gluten free.

since i've given up gluten, i've lost 100 lbs in a year. i've gone as low as 93 lbs eating 2 pints of haagen dazs a day in addition to everything else i was eating. i VERY slowly gained some weight. i have late stage lyme disease & i cannot tolerate meat. it just sits in my stomach. the only meat i can tolerate is nitrate free bacon. i have no clue why. my GI couldn't give me an answer for it either.

i've lost 14 lbs in the last month... i'm now 102 lbs & i'm quickly losing again. i experience chest pain & shortness of breath daily. brain fog, stiffness, extreme exhaustion with insomnia, no appetite (i do force myself to eat) & nausea almost all the time. last month i went through a very scary week of increased heart rate with horrendous vertigo. turning my head in bed was enough to make the room spin. prior to that, it was a week of migraines.

i realize that a lot of these symptoms could simply be lyme but after 2 ER visits this weekend, i really don't think it's related. i went in because i had oily stool so i definitely know i have a malabsorption problem although i suspected it all along. i also had intense pain in my left side so i was afraid it was my gallbladder or pancreas. that coupled with being extremely dizzy & VERY pale lately was enough to scare me.

they ran every blood test you can think of. they first checked for cancer then leukemia even anemia. the second visit they checked all my heart functions because i was complaining of numbness in my arm & shoulder - another symptom i have every day. this coupled with the new symptoms made me worry i was about to have a heart attack. they did a ton of blood work & there's nothing wrong with my heart. x-rays & ct scan.

the gastrografin they gave me ended up giving me diarrhea for 24 hours so i didn't eat anything. i finally had some rice, cheese, avocado, olives & lettuce with baked tortilla chips. i started to feel sick almost immediately. then i realized i was starting to experience the symptoms i had when i was still eating gluten. increased heart rate, pulse in the belly, extreme thirst & nausea.

i'm coming to you guys because this is brand new to me. does it seem like i have a casein/lactose issue? would this cause me to lose all this weight?

Yeah with symptoms that bad i would eliminate all dairy. Usually we would say reintroduce lactaid milk to determine whether it is the sugar or the protein in milk but with your reaction being so negative and you being so ill i would just say go ahead and lay off dairy. So you never had your symptoms similar to glutening with cheese or dairy before?

Is the things you ate something you have eaten before with no reaction? Same name brand with no change in ingredients?

B/T all of us you will definitely get some insight so rest assured and welcome to the board! :-)

mazzy Newbie

Yeah with symptoms that bad i would eliminate all dairy. Usually we would say reintroduce lactaid milk to determine whether it is the sugar or the protein in milk but with your reaction being so negative and you being so ill i would just say go ahead and lay off dairy. So you never had your symptoms similar to glutening with cheese or dairy before?

Is the things you ate something you have eaten before with no reaction? Same name brand with no change in ingredients?

B/T all of us you will definitely get some insight so rest assured and welcome to the board! :-)

could this cause malabsorption like this? i've looked all over the internet & can't get a definitive answer. today was the first day i was dairy free & i had a reaction to some organic limes i just introduced. i also started a food journal where i can keep track of meals & symptoms. as far as symptoms go, it's hard to say. i never thought much about it but i will say i'm nauseous more often than not after eating. i eat the same things over & over because they're safe but since i have leaky gut i'm wondering if i gave myself an intolerance by not alternating enough.

Razzle Dazzle Brazell Enthusiast

could this cause malabsorption like this? i've looked all over the internet & can't get a definitive answer. today was the first day i was dairy free & i had a reaction to some organic limes i just introduced. i also started a food journal where i can keep track of meals & symptoms. as far as symptoms go, it's hard to say. i never thought much about it but i will say i'm nauseous more often than not after eating. i eat the same things over & over because they're safe but since i have leaky gut i'm wondering if i gave myself an intolerance by not alternating enough.

Are you nightshade free? If not i would definitely eliminate that. Maybe you havent rotated enough and your body is not used to the new foods. Keep trying your best to rotate I would say. Also if you have to maybe you can get something to calm your immune system. Im about to go buy some ginger myself. In your shape I am very concerned. I think as far as malabsorption, anything that can cause your gut not to move properly and can cause bloat can cause us not to absorb vitamins properly. I cant say in regards to caloric digestion though. Ginger Ale by the way is good for an upset stomach like sprite but ginger naturally soothes the stomach and also works as an immune system stabilizer. I have been doing research myself going through similar things, feeling like i was allergic to everything so i strongly sympathize. Target calming that immune system and then you can introduce new foods slowly and rotate as you said.

Bubba's Mom Enthusiast

The symptoms you're having sound like an intolerance to some food. Dairy would be my first guess. It can cause villi flattening too.

https://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

You might also have a small intestine bacterial overgrowth. (SIBO) If you have it, the bad bacteria eat the foods you eat and emit toxins that can enter your blood stream. This can affect your brain and heart, anything in your body really. I had symptoms very similar to yours and when tested they found I had a severe overgrowth. Corn gave me dizzyness because of those toxins.

If you've ever been on acid reducing medications it's more likely you have SIBO. Our stomach acid is supposed to help kill off bad bacteria.

IMO you should stop the dairy for now, especially with a leaky gut. It would be a good idea to be tested for SIBO too.

mazzy Newbie

Are you nightshade free? If not i would definitely eliminate that. Maybe you havent rotated enough and your body is not used to the new foods. Keep trying your best to rotate I would say. Also if you have to maybe you can get something to calm your immune system. Im about to go buy some ginger myself. In your shape I am very concerned. I think as far as malabsorption, anything that can cause your gut not to move properly and can cause bloat can cause us not to absorb vitamins properly. I cant say in regards to caloric digestion though. Ginger Ale by the way is good for an upset stomach like sprite but ginger naturally soothes the stomach and also works as an immune system stabilizer. I have been doing research myself going through similar things, feeling like i was allergic to everything so i strongly sympathize. Target calming that immune system and then you can introduce new foods slowly and rotate as you said.

i'm not, actually. i do eat white potatoes but i can't tolerate any other nightshades with the other exception of onion powder. i have ginger ale that i get from whole foods i love. it's 65% juice & i can tolerate it where as i can't tolerate any artifical sweeteners. i'll up my intake of that. i had some lemon & lime water yesterday hoping to detox this stuff (lemon water is pretty much all i drink but the lime is new) & my throat felt strange all day so i'll be cutting out lime, too. i can't wait to see what the blood tests show for the stool test they did in the ER.

this is my second day eliminating dairy & i've gained a small amount so i might be on to something.

mazzy Newbie

The symptoms you're having sound like an intolerance to some food. Dairy would be my first guess. It can cause villi flattening too.

https://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

You might also have a small intestine bacterial overgrowth. (SIBO) If you have it, the bad bacteria eat the foods you eat and emit toxins that can enter your blood stream. This can affect your brain and heart, anything in your body really. I had symptoms very similar to yours and when tested they found I had a severe overgrowth. Corn gave me dizzyness because of those toxins.

If you've ever been on acid reducing medications it's more likely you have SIBO. Our stomach acid is supposed to help kill off bad bacteria.

IMO you should stop the dairy for now, especially with a leaky gut. It would be a good idea to be tested for SIBO too.

that sounds so accurate. i was on a ton of acid reducing meds & then got h. pylori so i had to do the triple treatment with an acid reducer. i've been on antibiotics & steroids so regularly, too. what does the SIBO test involve?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Razzle Dazzle Brazell Enthusiast

i'm not, actually. i do eat white potatoes but i can't tolerate any other nightshades with the other exception of onion powder. i have ginger ale that i get from whole foods i love. it's 65% juice & i can tolerate it where as i can't tolerate any artifical sweeteners. i'll up my intake of that. i had some lemon & lime water yesterday hoping to detox this stuff (lemon water is pretty much all i drink but the lime is new) & my throat felt strange all day so i'll be cutting out lime, too. i can't wait to see what the blood tests show for the stool test they did in the ER.

this is my second day eliminating dairy & i've gained a small amount so i might be on to something.

Yay good for you! Keep trying and never give up. Just to mention, my throat and my lips hurt and burn when i drink water from those plant dasani bottles. Idk why. Its just always a scrambling guessing game with us sometimes lol. Oh and are you on some gluten free probiotics? That may help. The suggestion before me sounds like it may be onto something too :-)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,681
    • Most Online (within 30 mins)
      7,748

    Carrie Elliott
    Newest Member
    Carrie Elliott
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Histamine itself does not have a taste. The salty taste associated with tears or mucus comes from their electrolyte content, not from histamine. While histamine can be part of various immune responses, its connection to gluten reactions is not direct, and it does not taste salty. The salty taste of tears and mucus is due to their sodium chloride content, not histamine.
    • knitty kitty
      @Matt13, Your symptoms sound similar to the ones I had.  I had developed nutritional deficiencies, in particular, thiamine deficiency.  Gastrointestinal BeriBeri has all those symptoms and the fatigue was horrible.   Quick field test from WHO:  can you rise unaided from a squat?   If you have a serious thiamine deficiency, you cannot stand back up after squatting.  Really cool test.  Read for yourself the article below, compare the symptoms, discuss with your doctors.  Doctors can administer high dose thiamine via IV and you will improve very quickly.  I had improvement within an hour.  No harm in trying, process of elimination and all that. Thiamine is safe and nontoxic even in high doses.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/ Are you aware regular Ensure Plus contains dairy?  Are you aware Plant Protein Ensure Plus contains oats?  Just checking.   Have you tried the AutoImmune Protocol diet?  Highly recommend.   Check out my blog to read excerpts of my journey and my clueless doctors. Keep us posted on your progress!
    • RMJ
      g/L, a weight per volume unit, would be a very unusual unit for a celiac specific (EMA) test.   1.24 g/L would be in the normal range if this was a TOTAL IgA test. Best to ask the doctor.
    • Lieke
      Hi Hi! I am looking for a PCP in the Portland ME area. I have been dealing with Celiac disease for 30 years. My specialist Celiac MD is in Boston, but I want somebody closer by. Am thinking of an MD working in functional medicine/integrative medicine who is willing to ‘walk the journey’ with me. Despite a strict gluten-free diet, I still have challenges, am ‘super sensitive celiac’ with at time cross contact issues when going out to dinner.  any suggestions?  much appreciated! lieke
    • knitty kitty
      Part of the body's immune reaction to gluten is to release histamine.  This tastes salty, just like tears and snot.        
×
×
  • Create New...