Jump to content

  • 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

New To This Forum

LoveBeingATwin

By LoveBeingATwin
in Coping with Celiac Disease

Recommended Posts

LoveBeingATwin Enthusiast
LoveBeingATwin
Posted

Hello Everyone!

I just wanted to say Hi and introduce myself. I was officially diagnosed with celiac disease in December. I am currently trying to figure out how to do this for the rest of my life and still have a smile on my face. I am doing quite good at it however I get frustrated easily. I found out I had celiac disease when I started having problems with fullness all the time. I took all the medication for indigestion/heartburn you could think of. The doctor ordered a stomach emptying test for both my solids and liquids. Well needless to say, my liquids we not emptying. So that is where the malabsorption comes in. I then had an upper GI done that included a biopsy. That did come back positive. We also did blood work which really put the icing on the cake. My levels were really high.

So that is how I got to this point. I can tell if I have been eating gluten because I get really bloated and have diarreha really bad. I have noticed that even since I have chanced my diet completely, I still feel like I am fighting with the malabsorption. Does anyone have any ideas why? I went and got some gluten free/wheat free all natural viatamins and started taking those. I do feel better but I still feel like my body is holding onto everything I eat and drink. I did see a dietician, but I felt like it was a waste of time. I didn't learn anything new that I haven't already researched myself.

I am looking forward to talking with everyone and getting some advice. Thanks for listening!

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

Welcome lbat!

Give yourself some time to heal. It could take months for you to feel like everything's starting to be absorbed normally.

dlp252 Apprentice
dlp252
Posted

Hello and welcome!!! Sounds like you have a good start to it all. It can take quite a while for the intestines to heal and while they are healing you may still experience some negative symptoms. Some people heal quickly, but for some it can take a year or more to heal. It's always possible that there may also be other intolerances too--casein in dairy products is a common one for people with gluten issues.

cnlazarus Newbie
cnlazarus
Posted
Hello Everyone!

I just wanted to say Hi and introduce myself. I was officially diagnosed with celiac disease in December. I am currently trying to figure out how to do this for the rest of my life and still have a smile on my face. I am doing quite good at it however I get frustrated easily. I found out I had celiac disease when I started having problems with fullness all the time. I took all the medication for indigestion/heartburn you could think of. The doctor ordered a stomach emptying test for both my solids and liquids. Well needless to say, my liquids we not emptying. So that is where the malabsorption comes in. I then had an upper GI done that included a biopsy. That did come back positive. We also did blood work which really put the icing on the cake. My levels were really high.

So that is how I got to this point. I can tell if I have been eating gluten because I get really bloated and have diarreha really bad. I have noticed that even since I have chanced my diet completely, I still feel like I am fighting with the malabsorption. Does anyone have any ideas why? I went and got some gluten free/wheat free all natural viatamins and started taking those. I do feel better but I still feel like my body is holding onto everything I eat and drink. I did see a dietician, but I felt like it was a waste of time. I didn't learn anything new that I haven't already researched myself.

I am looking forward to talking with everyone and getting some advice. Thanks for listening!

cnlazarus Newbie
cnlazarus
Posted
Hello Everyone!

I just wanted to say Hi and introduce myself. I was officially diagnosed with celiac disease in December. I am currently trying to figure out how to do this for the rest of my life and still have a smile on my face. I am doing quite good at it however I get frustrated easily. I found out I had celiac disease when I started having problems with fullness all the time. I took all the medication for indigestion/heartburn you could think of. The doctor ordered a stomach emptying test for both my solids and liquids. Well needless to say, my liquids we not emptying. So that is where the malabsorption comes in. I then had an upper GI done that included a biopsy. That did come back positive. We also did blood work which really put the icing on the cake. My levels were really high.

So that is how I got to this point. I can tell if I have been eating gluten because I get really bloated and have diarreha really bad. I have noticed that even since I have chanced my diet completely, I still feel like I am fighting with the malabsorption. Does anyone have any ideas why? I went and got some gluten free/wheat free all natural viatamins and started taking those. I do feel better but I still feel like my body is holding onto everything I eat and drink. I did see a dietician, but I felt like it was a waste of time. I didn't learn anything new that I haven't already researched myself.

I am looking forward to talking with everyone and getting some advice. Thanks for listening!

cnlazarus Newbie
cnlazarus
Posted
Hello Everyone!

I just wanted to say Hi and introduce myself. I was officially diagnosed with celiac disease in December. I am currently trying to figure out how to do this for the rest of my life and still have a smile on my face. I am doing quite good at it however I get frustrated easily. I found out I had celiac disease when I started having problems with fullness all the time. I took all the medication for indigestion/heartburn you could think of. The doctor ordered a stomach emptying test for both my solids and liquids. Well needless to say, my liquids we not emptying. So that is where the malabsorption comes in. I then had an upper GI done that included a biopsy. That did come back positive. We also did blood work which really put the icing on the cake. My levels were really high.

So that is how I got to this point. I can tell if I have been eating gluten because I get really bloated and have diarreha really bad. I have noticed that even since I have chanced my diet completely, I still feel like I am fighting with the malabsorption. Does anyone have any ideas why? I went and got some gluten free/wheat free all natural viatamins and started taking those. I do feel better but I still feel like my body is holding onto everything I eat and drink. I did see a dietician, but I felt like it was a waste of time. I didn't learn anything new that I haven't already researched myself.

I am looking forward to talking with everyone and getting some advice. Thanks for listening!

Rachel--24 Collaborator
Rachel--24
Posted

Welcome to the board!!

As previously stated....dairy could be a problem for you. Did your Dr. tell you that you should eliminate dairy until you have healed some??

If not I would suggest trying that and you may get some relief from your symptoms. When your villi are damaged you become lactose intolerant until the villi grow back. The enzymes for lactose digestion are at the tips of the villi....but these are usually not present at the time of diagnosis....when there is significant villi damage.

Other than that....it is still early days for you. It may take several months to feel significant improvement.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

lbat,

Welcome to the board! I am happy you have found this resource...it really is invaluable.

Well, the good news is that you have a rock solid diagnosis! (Hey, we have to be grateful for little things sometimes, right?) Just getting a diagnosis is step one of all this, so at least you are past that.

Now, onto the diet. Your body takes awhile to heal...unfortunately, just getting gluten out of your diet for a little while isn't enough. (I thought I'd eat gluten-free for a day and then I'd magically be better....whoops!) It can take weeks/months for your body to really improve, as it takes time to get gluten out of your system, then start healing, and then get all your levels of everything back up. Plus, if you are still getting glutened, then your body hasn't yet to fully recover. Each time you ingest gluten, it sets off the autoimmune reaction...the goal is to "stop" the "on" button from being pushed.

I think you will find that there are many people on here who had a gradual improvement in symptoms. I think it can be frustrating when you want to see tangible results!

I second the idea of taking dairy out for a few days and seeing if that helps your symptoms. Once you have healed, you may be able to tolerate it again.

Do you need help with ingredients? Are you sure that everything you are eating is gluten free? Have you checked medicines, personal care products, etc.? Are you eating out? Are you taking care to reduce cross contamination in your home? (these are all things that I had a steep learning curve on, so I just thought I'd ask). Feel free to ask anything. We all started in your shoes!

Best of luck, and I really hope your symptoms improve quickly!!!

Laura

cnlazarus Newbie
cnlazarus
Posted

Glad you are on your way to recovery.

Perhaps the most important thing is that you have found this forum.

The people and information here are priceless.

The index is probably a good place to start.

A few generalities that might be added...

Gluten intolerance seems to cluster with quite a few other "unpleasant" conditions e.g. dairy intolerance etc.

Genetics seems to be involved and the general trend seems to be that one segment of the human race has genetics from primarily meat eating ancestors who evidently didn't have a lot of diversity in their diets.

Those with gluten intolerance seem to have more of these genetics.

Which means that as much as the TV commercials make it look so appealing and natural to eat almost anything they try to sell you...

Often by the time someone realizes they are gluten intolerant a great deal of damage has already been done from many different insults... and their health and resistance has already been highly compromised.

It would be great and relatively easy if all one had to do was avoid gluten.

But it is just the tip of the dietary "iceberg".

Please spend as much time as it takes to search through the truly awesome knowledge on this site.

One thing for sure is that when there is money to be made at anything... ethics and morality start slipping fast! And this holds true in the food industry and most of the other industries which are polluting our air, food, and water.

You are beginning a journey of discovery of what is good to put into your body and what must not be.

To your good health.

blueeyedmanda Community Regular
blueeyedmanda
Posted

Hi!

Just wanted to say Welcome to the board, hope you find all the answers to the questions you have. This is a great place to meet people who understand exactly what you are going through. I have learned a lot from this site. It has helped me more than I can ever say.

Good Luck!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.