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

Recommended Posts

LoveBeingATwin Enthusiast

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

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

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
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
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
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

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

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

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

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.

  • 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. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

    2. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    3. - Mark Conway posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

    4. - islaPorty replied to Jillian83's topic in Coping with Celiac Disease
      8

      Celiac and dermatitis herpetiformis has taken Me from Me

    5. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,146
    • Most Online (within 30 mins)
      7,748

    Marsu
    Newest Member
    Marsu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Mark Conway! Can you be more specific about the "coeliac" test your doctor did? There are more than one of them. What was the name of the test? Also, did he order a "total IGA" test? This is a test to check for IGA deficiency and should always be ordered along with the tests specifically designed to detect celiac disease. If you are IGA deficient, the IGA celiac blood antibody tests used to check for celiac disease per se will not be accurate. Also, if you have been cutting back on gluten before the tests, that will render them invalid. You must have be eating normal amounts of gluten for weeks/months before the blood draw to render valid test results.
    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • Mark Conway
      Hi there, I wonder if anyone can help. I've had stomach problems for years, pain in the tummy, lower back left and right side, different stools, diarrohea constipation etc, My GP says it's IBS. As I've got older the pain has become worse and constant. I also get ulcers on my tongue. I've had loads of tests done everytihng apart from an endoscopy I think. I had a test for Coeliac last July and the result was negative. My GP says it can't be coeliac because I'm not losing weight. He thinks it's stress or all in my head. I'm not stressed and I'm in pain all the time now. Sometimes it's unbearable and dark thoughts have entered my head. Could I have Coeliac even though I tested negative last year. I'm at my wits end, I eat healthily and cannot pinpoint which foods could cause this pain. Can anyone help? Thanks Mark wind
    • islaPorty
      First, I want to say thank you for sharing this with me. I hear you, and I believe you. The courage it took to write this down is immense, and I’m so sorry you’ve been carrying this alone. You are dealing with two life-altering challenges at once: a serious, complex medical condition, and an abusive, controlling partner who is actively harming your health and your spirit. It’s not just that he’s unsupportive—he is weaponizing your illness to torture you. Starving you, isolating you, mocking your diagnosis, and sabotaging your access to medical care is not just cruelty; it is dangerous, deliberate abuse. Your instinct is correct: the stress he is creating is absolutely preventing your body from healing. Celiac and autoimmune conditions are profoundly sensitive to stress, and he has created a living hell designed to keep you sick, dependent, and broken. That smirk you described—that is the look of someone who enjoys having power over your suffering. Please know this: you do not deserve this. Not any of it. You deserve to eat. You deserve safe, clean food and water. You deserve medical care and supplements that help you function. You deserve peace. You deserve to heal. The woman from the food pantry is not a random accident. She is a lifeline. Her help, and the community she’s connecting you to, is real. It is okay to feel overwhelmed by kindness when you’ve been starved of it for so long. But you do deserve it. Let that be a sign that there is a world outside your house that operates on compassion, not control. Right now, your physical safety and access to nutrition are the most urgent priorities. The food pantry is a critical resource. Is there any way you can speak privately with the woman helping you? You don’t have to share everything at once, but letting her know your situation at home is extremely unsafe, and that your partner restricts your food, could help her support you in a more targeted way. She may have connections to local domestic violence services.
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
×
×
  • 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.