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

Levels Of Celiac Disease


jensey

Recommended Posts

jensey Apprentice

I just got test results that suggest I am prone to or HAVE celiac disorder/disease. My symptoms are pretty basic in that I burp a lot (may not be a symptom) and I have had diarrhea for at least the past 8 months.

My father thinks he may be gluten intolerant, but has been diagnosed with a much more severe gastrointestinal problem and because he finds little to no relief from living gluten free he wonders if that is what is issue is. I have been reading posts and checked out bits and pieces of celiac sites and I wonder if he was for a long time living with celiac disease and is now facing the long term effects of not being diagnosed.

I wonder if I am in the early stage of the disease. My doctors nurse relayed that before I came in to speak with him I "google" celiac disease and the numbers the lab sent to me point to the fact that I may have it.

ARE THERE STAGES of the disease (stupid question because all diseases have stages)? Do you start out with a predisposition for wheat allergy, try to eat healthy in life (for the most part) eating only whole grains and in effect CAUSE yourself to have this disease? I never really cared for bread and I wonder if innately I knew I did not tolerate wheat well.

I hope that if there are stages of the disease the CONSTANT diarrhea is a phase that is easily remedied, however because I work in a bakery I wonder if my intolerance will continue to grow and if the D will never stop. AARGH as I am sure many of you can relate the revelation that this is most likely the CAUSE of my daily issues I wonder how long and IF it will ever subside.

Because of my job I wonder if it will get progressively worse or will the diet take care of it. Either way at least I have an answer as to why my trips to the bathroom aren't as simple as they used to be lol. I am actually excited to be FORCED to cook for myself because maybe I will lose the 80 or so extra pounds I have on my body. We'll see. If anyone knows ANYTHING about the PROGRESSIVE STAGES of this disease I would love to hear about it. I will certainly be talking to my DR. soon, but info from those who are enduring will probably searve me just as well if not better and will certainly add to whatever my DR. has to offer.

Please post away!

Good digesting to us all!


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



Celiac.com Sponsor (A8-M):



The Fluffy Assassin Enthusiast
I just got test results that suggest I am prone to or HAVE celiac disorder/disease. My symptoms are pretty basic in that I burp a lot (may not be a symptom) and I have had diarrhea for at least the past 8 months.

My father thinks he may be gluten intolerant, but has been diagnosed with a much more severe gastrointestinal problem and because he finds little to no relief from living gluten free he wonders if that is what is issue is. I have been reading posts and checked out bits and pieces of celiac sites and I wonder if he was for a long time living with celiac disease and is now facing the long term effects of not being diagnosed.

I wonder if I am in the early stage of the disease. My doctors nurse relayed that before I came in to speak with him I "google" celiac disease and the numbers the lab sent to me point to the fact that I may have it.

ARE THERE STAGES of the disease (stupid question because all diseases have stages)? Do you start out with a predisposition for wheat allergy, try to eat healthy in life (for the most part) eating only whole grains and in effect CAUSE yourself to have this disease? I never really cared for bread and I wonder if innately I knew I did not tolerate wheat well.

I hope that if there are stages of the disease the CONSTANT diarrhea is a phase that is easily remedied, however because I work in a bakery I wonder if my intolerance will continue to grow and if the D will never stop. AARGH as I am sure many of you can relate the revelation that this is most likely the CAUSE of my daily issues I wonder how long and IF it will ever subside.

Because of my job I wonder if it will get progressively worse or will the diet take care of it. Either way at least I have an answer as to why my trips to the bathroom aren't as simple as they used to be lol. I am actually excited to be FORCED to cook for myself because maybe I will lose the 80 or so extra pounds I have on my body. We'll see. If anyone knows ANYTHING about the PROGRESSIVE STAGES of this disease I would love to hear about it. I will certainly be talking to my DR. soon, but info from those who are enduring will probably searve me just as well if not better and will certainly add to whatever my DR. has to offer.

Please post away!

Good digesting to us all!

Lemme go with the stuff I can answer, sadly not much. Celiac disease takes different people in different ways. Some, like me, are largely silent, meaning there is little in the way of gastrointestinal symptoms. Others get cramps, bloating, diarrhea, and these things can go on for days. As you'll see in my sigline, I had no idea what was wrong with me until I developed lactose intolerance in my 40s. Celiac disease often leads to other intolerances and sometimes to allergies. This could easily be what happened to your dad. He needs to keep a food diary and try to eliminate whatever other foods might be causing him problems. Given my experience, I'd recommend starting with dairy. (On the bright side, after a year or so of living gluten-free, one can usually reintroduce these foods.)

Celiac disease is not an allergy, but an auto-immune disorder. This means that rather than your body attacking the triggering food and sometimes causing damage to your own surrounding tissue, the triggering food is causing your body to attack itself. In celiac disease, this is always expressed in the small intestine, but often in many other parts of the body including the thyroid, the skin, etc. A lot of the time the secondary attacks aren't obviously related to celiac or gluten. This is one reason why celiac disease is so often misdiagnosed.

As to the bakery, theoretically, if you wear gloves and get the highest quality surgical mask you can find, you ought to be ok, but... I'd find a new job if you can. It's true that breathing flour isn't eating flour, but it only takes a microscopic amount of gluten to find its way to the alimentary canal to trigger a response. It seems like too much of a risk to me. Certainly talk to your doctors about this, though.

Oh, the diarrhea clears up within a few days, but in your case this is complicated by the bakery job. If you can find a way to keep working there while not ingesting any gluten from the flour in the air, though, four days or a week at the max should take care of it.

As to weight loss, people's experiences vary. I had the famine victim/pregnant junkie body type (as a male--very attractive, you bet) and dropped 20 lbs immediately and in the subsequent year and a half or so dropped several chins and four inches in waist on very little exercise. I seriously doubt that this had much to do with gluten-free-ness per se; I quit going to pizza and Chinese buffets and fast food places and, as you say, mainly cooked for myself. You'll see that this isn't a weight-loss diet, but you'll probably find like I did that you have vastly more energy and suddenly exercising makes sense.

Good luck to you, and welcome to the tribe!

Foxfire62 Newbie
I just got test results that suggest I am prone to or HAVE celiac disorder/disease. My symptoms are pretty basic in that I burp a lot (may not be a symptom) and I have had diarrhea for at least the past 8 months.

My father thinks he may be gluten intolerant, but has been diagnosed with a much more severe gastrointestinal problem and because he finds little to no relief from living gluten free he wonders if that is what is issue is. I have been reading posts and checked out bits and pieces of celiac sites and I wonder if he was for a long time living with celiac disease and is now facing the long term effects of not being diagnosed.

I wonder if I am in the early stage of the disease. My doctors nurse relayed that before I came in to speak with him I "google" celiac disease and the numbers the lab sent to me point to the fact that I may have it.

ARE THERE STAGES of the disease (stupid question because all diseases have stages)? Do you start out with a predisposition for wheat allergy, try to eat healthy in life (for the most part) eating only whole grains and in effect CAUSE yourself to have this disease? I never really cared for bread and I wonder if innately I knew I did not tolerate wheat well.

I hope that if there are stages of the disease the CONSTANT diarrhea is a phase that is easily remedied, however because I work in a bakery I wonder if my intolerance will continue to grow and if the D will never stop. AARGH as I am sure many of you can relate the revelation that this is most likely the CAUSE of my daily issues I wonder how long and IF it will ever subside.

Because of my job I wonder if it will get progressively worse or will the diet take care of it. Either way at least I have an answer as to why my trips to the bathroom aren't as simple as they used to be lol. I am actually excited to be FORCED to cook for myself because maybe I will lose the 80 or so extra pounds I have on my body. We'll see. If anyone knows ANYTHING about the PROGRESSIVE STAGES of this disease I would love to hear about it. I will certainly be talking to my DR. soon, but info from those who are enduring will probably searve me just as well if not better and will certainly add to whatever my DR. has to offer.

Please post away!

Good digesting to us all!

I would recommend staying on a gluten diet and getting tested immediately. I've heard mention there are 4 stages (with 4 being severe), and there is refractory sprue...meaning the damage is so bad, it can never heal. If you haven't had the celiac blood panel, do so immediately. If you have, and the results are either positive or negative, get several biopsies of your duodenum to check for villi atrophy/blunting. A biopsy is the only accurate dx. I started with burping as well, and the symptoms got worse (although no big "D"...instead, constipation seems to be an issue, especially since I have problems digesting protein/fats). Your father should also have it dx, in my opinion, and go and STAY on a gluten-free diet, even if results are not as immediate as he'd like. (It can take up to 2 years to heal...I'm almost 1 year out, and I went from severe to mild blunting....still healing and suffering.)

Strange you said that about trying to eat healthy. I wanted my heart to be healthy because of the heart disease in my family and began eating a lot of wheat bread. I noticed I wasn't tolerating it very well. So when I went to my GI, he didn't even think to look for celiac disease until I mentioned I wanted to get checked for a wheat allergy...THEN he thought of celiac disease. My tTg level was 100+! Anyway, it is said that stress, injury or surgery can cause celiac disease to present itself in adults. I did have hernia surgery 2 years ago. I also started eating wheat bread before that. I also had a neck injury (slight, but still) before I had major symptoms start last year. Who knows what made it come out. Main thing now is that I'm treating it.

As for working in a bakery...I don't know...I'd think twice about that, especially if you have the disease. But don't stop working there until it's been confirmed with a biopsy, and don't stop eating gluten until after the biopsy too. But if you are confirmed with the disease, anything from soaps, shampoos, hair spray, make-up, and probably the particles found in the bakery in which you work may find its way inside, and any gluten causes damage to the intestinal villi.

The sooner you find out, the better off you are and the less you'll suffer.

And you are wise to get more information from this site...many doctors don't really know much about this disease. I would recommend, after diagnosis, finding a GI who specializes, at least a little, in the disease. My GI told me after diagnosis, he didn't know what else to do for me...at least he was being honest.

I wish you the best.

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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.