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

Don't Even Know If I Am Celiac...

chocolatebunny

Recommended Posts

chocolatebunny Rookie
chocolatebunny
Posted

Hi everyone,

I have been following the gluten free diet for 8 months or so, but I don't really know if I have celiac disease. I got put on the diet by a doctor who I went to because I had lost my menstrual cycle and also had thyroid disease symptoms. She tested my vitamin levels and found that I was profoundly decifient in some vitamins. Some of these vitamins such as vitamin D, I had been taking supplements of an adequate amount so I wasn't absobing them. She said that I was likely losing the vitamins through celiac disease even though the test came out negative (she said that for alot of people it comes out negative when they have the disease). She put me on the gluten free diet and upped my vitamins. I did feel better and my menstrual cycle, though still irregular came back. Amazingly, my thyroid is now perfect. My TSH went from over 6 to 1.5. I am not cold all the time anymore. I am not sure though if this is from the gluten free diet or from the vitamins. What makes me question if the gluten free diet is doing anything even more is that in the summer I lowered my vitamin intake and my symptoms started returning even though I was eating gluten free. I don't have many of the typical celiac disease symptoms at all such as stomach or digestive problems. My mom, however, went to the same doctor as I went to and her test for celiac disease was also negative, but she really gets sick and gets sharp stomach pains when she eats gluten. One thing since I went gluten free is I gained 15 lbs, which I've read is common in people with celiac who start following a proper diet. I was very thin before and could not keep on weight. This also might have been my age as I am only 16 and maybe gained weight naturally, but it was very sudden. It is hard though to follow the gluten free diet when I don't know for sure if I even have to. It is unmotivating because if I eat gluten I don't get sick or anything. I also go and do things with my friends and my diet is restricted, and it's hard to restrict for possibly no reason. It's almost embarrasing sometimes to keep saying I'm allergic to gluten when I don't know if I really am. Also, I'd really like to be vegetarian (and I used to be) but with the gluten free diet it is hard to restrict more. Have any of you ever been in a similar position, and if so how do you find out if you really need to do the diet.

Thank you!

~Liz

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

Well, seems to me that if you eat gluten again and started losing weight, that could be one indicator for you. The thing is, you may be at a very early stage of damage, so symptoms might not appear much if at all from eating gluten. I didn't recognize my symptoms until a high amount of damage had already occurred. I'd really recommend proceeding cautiously to avoid doing yourself harm. Don't rely on symptoms being so obvious that they can't be mistaken for anything else. For years doctors kept saying there was nothing wrong with me, or it was in my head, or I had a viral infection, or I was faking to get attention or to stay home from school.

It may also take awhile of eating gluten again before you see any changes. There are tests that may or may not give you a reliable indication. I never sought an "official" diagnosis. Not only did I give up on the medical profession long ago, but the gluten-free diet works for me, so I don't care what any amount of testing would suggest. That's my own opinion and choice of course. You'll have to weigh the risks and benefits, and decide for yourself. Sure the diet is more difficult to have confidence in enough to follow when the symptoms don't show much or at all. It could be tough to figure out in your case. One additional thing to look into might be if the gluten-free diet has eliminated or added anything else that might explain the weight gain. You may be allergic to something other than or in addition to gluten.

I'm sorry I don't have a more definitive answer for you. Perhaps other members can relate to your situation better than I, and provide a clearer idea what direction you can take.

Creative-Soul Newbie
Creative-Soul
Posted
Hi everyone,

I have been following the gluten free diet for 8 months or so, but I don't really know if I have celiac disease. I got put on the diet by a doctor ...

She tested my vitamin levels and found that I was profoundly decifient in some vitamins. Some of these vitamins such as vitamin D, I had been taking supplements of an adequate amount so I wasn't absobing them. She said that I was likely losing the vitamins through celiac disease even though the test came out negative (she said that for alot of people it comes out negative when they have the disease). She put me on the gluten free diet and upped my vitamins...

What makes me question if the gluten free diet is doing anything even more is that in the summer I lowered my vitamin intake and my symptoms started returning even though I was eating gluten free. I don't have many of the typical celiac disease symptoms at all such as stomach or digestive problems.

Also, I'd really like to be vegetarian (and I used to be) but with the gluten free diet it is hard to restrict more. Have any of you ever been in a similar position, and if so how do you find out if you really need to do the diet.

Thank you!

~Liz

Hi, Liz!

Okay..I'm going to take a stab at this...I'm sure there'll be others who'll pitch in and correct me if I'm wrong, but...

Many who have Celiac also have malabsorption issues (especially when first diagnosed, which have to be addressed in order for the body to begin to truly heal) which is why your Doctor started you on the vitamin regimen that she did. The gluten-free diet serves to stop the ingestion of the offender, giving your system an opportunity to heal AND after not being able to absorb nutrition properly, you have to play 'catch-up' with all the vitamins you've been missing...both work together.

You've seen great results from the diet so far, but it can take quite a while longer for your system to heal totally - that's why your symptoms may have returned when you lowered your Vits...you have to give it more time :)

I was diagnosed solely by dietary response by my doctor; my symptoms where mainly neuorological but the GI reactions showed up after going Gluten free... and they're pretty bad!!! If I eat Gluten, I want to DIE I am in so much pain...also my depression/panic attacks etc come raging back; no more for me!!! I can understand how difficult it must be for you not to experience the "typical" reactions most Celiacs/ Gluten intolerants do, but it may help to remember that, even though you may not react in certain ways now, that a) dietary response is a valid diagnosis, and B) you're avoiding a whole host of health issues that could really bite you later! There are many on this board who also don't have the usual symptoms...I'm sure they have great advice on how to deal with this!

Also keep in mind that you're still new to these new habits... It helps to remember that it is a matter of gaining and maintaining good health; also, keep remembering how good you feel now as opposed to how you felt pre-gluten-free. Things will get better, I promise!

Oh... I'm also vegetarian! Please feel free to ask me anything/talk to me anytime... all the best to you!

Elle4559 Newbie
Elle4559
Posted

Sounds like a confusing situation to be in right now. I was diagnosed the same way with a doctor telling me I needed to eat gluten free even though my blood results were inconclusive, I was bummed and confused by this. I understand how tough it is to tell everyone you have a "gluten allergy" when really you aren't sure exactly what you have going on and would really love to eat that pizza too! My recommendation is to continue eating gluten free for the time being to give your body adequate time to decide what it thinks about the diet but also to look at all possible reasonings for why your thyroid and other non digestive symptoms improved on the diet. Maybe eating gluten free or reintroducing meat expanded your diet and gave you more nutrients or you made a lifestyle change of some kind while gluten free that is helping you. For example if you were vegetarian pre-gluten free then it would have been harder for your body to absorb the nutrients such as iron, zinc, and B12 but once eating meat your body was given those nutrients in a more readily absorbable fashion. Don't settle for your diagnosis until you are comfortable with it and know you are or are becoming a healthy person.

Ursa Major Collaborator
Ursa Major
Posted

Liz, since celiac disease is hereditary, and you have become so much healthier on the gluten-free diet, it is very likely that you do have celiac disease.

There is still one option for diagnosis that is going to work, and that is testing through Open Original Shared Link. It will still be accurate up to about a year on the gluten-free diet. If your parents could afford that, you would be able to know for sure if gluten is a real problem for you.

Creative-Soul Newbie
Creative-Soul
Posted

If it helps any...I was vegetarian for many years before going gluten-free, and for a couple of years had to do battle with a hypoactive thyroid. I got it under control before going on this diet, and have been fine ever since. I also agree with Ursa Major...

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. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    2. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    3. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    4. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    5. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    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

    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
×
×
  • 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.