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
      127,483
    • Most Online (within 30 mins)
      7,748

    itsemily
    Newest Member
    itsemily
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • dublin555
      I’ve been through something similar recently, and I know how frustrating it can be when nothing seems to work. Based on what you’ve described, it might be worth considering dermatitis herpetiformis, especially with the family history of celiac disease. Testing could give you some answers, and while online kits aren’t as reliable as a GP, they’re a good start if appointments are hard to get. I also found relief through medical cannabis for my eczema, at Releaf, a clinic in the UK that offers eczema medical cannabis treatment. They start with a low dose, adjust weekly, and track progress through online consultations.
    • trents
      Welcome to the forum, @Jaylan! Almost all of the symptoms and medical conditions you describe have been found to be associated with celiac disease. But they can also be caused by other things as well. There certainly is enough circumstantial evidence in your list of medical problems to warrant being tested for celiac disease. Ask your physician to order a celiac panel consisting of, at the very minimum, these two blood antibody tests: total IGA and tTG-IGA. Please do not attempt to limit your gluten intake before the blood draw is taken or you will invalidate the testing. Incidentally, celiac disease is often misdiagnosed as IBS.
    • Jaylan
      Hi there!  I’ve recently been tested for celiac disease, along with other autoimmune diseases. My symptoms started back in 2018 with joint pain in my knees. Since then, it has progressively worsened. I now have joint pain in both knees, elbows, and sometimes my shoulders. The pain is almost unbearable. I feel so stiff in the mornings, and this stiffness can last the whole day. I also experience swelling and warmth around those areas.   Other symptoms include IBS (diagnosed at age 16), restless legs, chest pain, tiredness, miscarriages, bloating, and sharp pain on the right side of my stomach. In the past, I’ve also had problems with a vitamin D deficiency, and my serum folate levels recently came back very low.   My question is: How likely is it that I have celiac disease?    
    • Rebeccaj
    • jimmydee
×
×
  • Create New...