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

Sick? Celiac Disease Maybe?

queeniemikki

By queeniemikki
in Meet Up Room

Recommended Posts

queeniemikki Newbie
queeniemikki
Posted

For the last few months i've been getting really bloated. I'm constipated almost all of the time (and laxatives don't help). I've had random headaches for as long as i remember. Doctors at first thought it was my eyes but eventually just decided there was nothing wrong with me and i must have seasonal allergies (which all the tests came back negative for). Since June i've lost almost 20 pounds unintentionally (used to be 125 now 108) but it doesn't look like I lost any weight because for all the weight I lost from my stomach has been replaced by bloat. But ive never really had bad diarriah which seems like what most people with celiac disease seem to have. I'm also really short compared to the rest of my family (mom 5' 6" dad 5' 11" twin brother 5' 8" and me 5'3". I have super sensitive bones (I've broken 6 bones in 4 years). Lately whenever i stand up o sort of get a head rush and can't see right for a few seconds because these black dots swarm all over my vision. I've always had really thin hair and now I'm just remembering that when i was little i would get rashes that my doctors decided was eczema but now I'm thinking it might have been DH. I've also had reflux since i was 13.

For 4 days last week i stopped eating gluten without telling anyone (I'm 15) and i didn't notice any MAJOR improvements but on friday i started eating it again and since then i've been really bloated and constipated.

Tips on how i should ask my parents to have me tested? It can't have come from my mom's side because she has Chron's disease and before she was diagnosed they tested her for celiac and she was negative. That means she couldn't have given it to me, right? But i want to be tested because mostly all of the symptoms for celiac disease sound like mine.

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

Celiac.com Sponsor (A8-M):


Seeking Newbie
Seeking
Posted

I'm new here, but I would just tell your mom what you told us. Say you have been researching it and you want to be tested. You can have it done with a simple blood test maybe at your physical. I can't imagine why she might object. IF she does you can take yourself of gluten and research as you already have done.

  • 2 weeks later...
Booghead Contributor
Booghead
Posted
:ph34r: Well I'm 5'0 and thats normal for my family B) I did lots of research and I was sure I had Crohns, I went to the doctor and they tested me for Celiacs which came back positive. So self-diagnosing doesn't always work. I didn't have much diarrhea either except once when I got really sick. Mostly it has been Constipation for me. Much better off of gluten, also Milk would really make me sick and bloat. Ask her for a blood test but if she says no ( I know how parents can be) then go off gluten and dairy, just try it. Be very careful not to eat any gluten in order to get results, and perhaps if you feel better after 3-4 weeks eat some gluten and see what happens. I'm new to this too. I'm 17, message me if you want to talk.
pricklypear1971 Community Regular
pricklypear1971
Posted

For the last few months i've been getting really bloated. I'm constipated almost all of the time (and laxatives don't help). I've had random headaches for as long as i remember. Doctors at first thought it was my eyes but eventually just decided there was nothing wrong with me and i must have seasonal allergies (which all the tests came back negative for). Since June i've lost almost 20 pounds unintentionally (used to be 125 now 108) but it doesn't look like I lost any weight because for all the weight I lost from my stomach has been replaced by bloat. But ive never really had bad diarriah which seems like what most people with celiac disease seem to have. I'm also really short compared to the rest of my family (mom 5' 6" dad 5' 11" twin brother 5' 8" and me 5'3". I have super sensitive bones (I've broken 6 bones in 4 years). Lately whenever i stand up o sort of get a head rush and can't see right for a few seconds because these black dots swarm all over my vision. I've always had really thin hair and now I'm just remembering that when i was little i would get rashes that my doctors decided was eczema but now I'm thinking it might have been DH. I've also had reflux since i was 13.

For 4 days last week i stopped eating gluten without telling anyone (I'm 15) and i didn't notice any MAJOR improvements but on friday i started eating it again and since then i've been really bloated and constipated.

Tips on how i should ask my parents to have me tested? It can't have come from my mom's side because she has Chron's disease and before she was diagnosed they tested her for celiac and she was negative. That means she couldn't have given it to me, right? But i want to be tested because mostly all of the symptoms for celiac disease sound like mine.

There's a 20% chance a Crohn's patient will be Celiac.

Both are autoimmune diseases. Both are genetic (Celiac has clearer markers than Crohn's).

You are at HIGHER risk with a dx'ed autoimmune disease in your parent.

Celiac can trigger at any time, and just because she had a negative test then doesn't mean she's negative now.

Btw gluten is inflammatory, and many Crohn's patients benefit from eliminating it (I believe even if they aren't Celiac).

Now, mom may not appreciate these facts....

Booghead Contributor
Booghead
Posted

There's a 20% chance a Crohn's patient will be Celiac.

Both are autoimmune diseases. Both are genetic (Celiac has clearer markers than Crohn's).

You are at HIGHER risk with a dx'ed autoimmune disease in your parent.

Celiac can trigger at any time, and just because she had a negative test then doesn't mean she's negative now.

Btw gluten is inflammatory, and many Crohn's patients benefit from eliminating it (I believe even if they aren't Celiac).

Now, mom may not appreciate these facts....

Well I didn't know those things. I do fell much better off of gluten but what your saying is that could still be from Crohns? I had a negative EGD Biopsy for Celiacs. I also had a Colonoscopy that looked normal. I wonder if I might have Crohns still? Or perhaps both?

pricklypear1971 Community Regular
pricklypear1971
Posted

Well I didn't know those things. I do fell much better off of gluten but what your saying is that could still be from Crohns? I had a negative EGD Biopsy for Celiacs. I also had a Colonoscopy that looked normal. I wonder if I might have Crohns still? Or perhaps both?

All I know is that 20% of Crohn's patients are Celiac... My cousin has Crohn's so I looked into it to that degree.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,729
    • Most Online (within 30 mins)
      7,748
    CeeCeeCohen
    Newest Member
    CeeCeeCohen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Marie70
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Marie70 · Posted

      Wow!! Scott, Trent and Christiana thank you so much for your fast replies!! The information you have shared with me has helped me tremendously.   Thank you for all the articles.  I appreciate you all so much!! I’ll keep you posted in this post.  I will encourage her to get tested.  I feel a little better!
    • DayaInTheSun
      Shortness Of Breath (the "sighs")?

      By DayaInTheSun · Posted

      It was gradual, just not being able to catch my breathe like I always had to take a deep breathe even taking a few steps I would be winded.
    • cristiana
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By cristiana · Posted

      Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this.   I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them.  Sometimes people just need a safe place to vent, and unfortunately having a go at one's parents is the all too easy option.  If she is anything like me, she will regret what she says one day.  (Oh... if only I had the chance rewind the clock!) I just wanted to add one more thing to Trent's and Scott's excellent posts and that is regarding diet:  I have to say, not one person  (my nutritionist, my gastroenterologist or GP) has EVER suggested that a poor diet was the cause of my coeliac disease.    In all the various clinics I have attended these past nearly 12 years no-one has ever asked if I was brought up on processed food, or questioned if I eat 5 fruit and veg a day.  Sure, unfortunately I am only too well aware that I could do a lot better with my diet and it's a constant challenge for me not to give into what I like (unfortunately I've always had a sweet tooth).   But I know some super healthy 10 fruit and veg a day types who still got coeliac disease, and equally, a lot of people who eat all the wrong stuff and they still have cast iron stomachs. Do encourage her to get checked though - it may be that she hasn't got coeliac disease at all. Come back to us if you need any more support through the process. Cristiana
    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

      Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject: Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet. Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?"  When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.
    • Scott Adams
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Scott Adams · Posted

      It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own. This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.      
×
×
  • Create New...