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

Help!

queeniemikki

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to be 125 now 108) but it doesn't look like I lost any weight because for all the weight I lost from my stomach has been replaced by bloat.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.

I tried to convince my parents about it but my mom thinks i'm being silly to eliminate it from my diet and my dad yelled about how i was going to MAKE myself sick by not eating it then eating it in a month.

HELP

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

Celiac.com Sponsor (A8-M):


beebs Enthusiast
beebs
Posted

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.

No, thats not correct. Just because she doesn't have Celiac does not mean you can't of inherited the specific genes from her. And even if she did have it, it doesn't mean that you would also have it. Complicated right? She has crohn's which is an autoimmune disease - the fact that there is autoimmune disease in your family means you have a higher chance of autoimmune diseases yourself. (Celiac is an autoimmune disease).

Just tell them the truth - you feel sick/gassy/bloated, you want to be tested. The first step is a simple blood test, do you think that they won't want you to be tested?

beebs Enthusiast
beebs
Posted

Ps- if you didn't eat it for a month and then ate it and got sick that would mean that you have a problem with gluten. Maybe point out how common Celiac is - that it is badly under diagnosed (about 80% of celiacs have no idea they have it), that you have autoimmune diseases in the family - tell them its just a blood test to start. And that you will continue eating gluten while being tested?

Di2011 Enthusiast
Di2011
Posted

PLEASE keep reading about gluten intolerance. Search like crazy on this and other websites. The more you learn the more you can speak to parents and medical people with some authority or knowledge. You need to describe your symptoms and reactions really specifically and even then you need to be objective to the response you get from them.

Most of the regulars on this forum have read or experienced the worst and range of gluten problems. Ask us as many and ANY questions you'd like. We are here to help. Sometimes when no one else can. What you are going through is not considered normal but many of us lived our lives thinking it must be normal.

My mum is in her 60's and has a 1980s understanding of celiac. So the idea of being gluten free is tough to lots of people. Many people think gluten-free is "hard" and/or "expensive" but it doesn't need to be if you have the good karma of finding a forum like this. Even at your age we can help.

Archived

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

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


  • Member Statistics

    • Total Members
      130,112
    • Most Online (within 30 mins)
      7,748
    pntszrn
    Newest Member
    pntszrn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wends
      Damage after 13 years gluten free

      By Wends · Posted

      Hi RMJ. I read your post. Sounds like you need a second opinion? Have you been advised by Dietitian or referred to one? There are protocols for treating patients that have ongoing celiac disease antibodies / histology. Particularly as you have nausea and pain. You probably already know about the gluten contamination elimination diet. It may be that you are super sensitive to even the allowed 20parts per million gluten in certified gluten free flours and products? An elimination of all grains for a time may be necessary? Especially oats if you currently include them? It’s worth noting that a minority of Celiacs have oat intolerance and T cell response similar to gluten (particularly carriers of high risk HLADQ2.5), and ongoing celiac damage to the gut can occur with oats. Even certified gluten free oats. If you are already super strict and careful about cross contamination, do you eat cheese or have any cow’s milk in your gluten free diet? It’s often overlooked, even by specialists and Celiac dietitians. But there are case study reports in children. There’s a study in adults showing mucosal reaction to casein in Celiacs, and quoted 50% of Celiacs react to casein similar to gliadin because of molecular mimicry. Then there was this letter to the editor following up a case that states, ”We conclude that given this novel information, pediatric, and possibly adult, celiac disease patients with suspected “refractory” celiac disease and no detectable gluten exposures, should be trialed on a combined CMP-GFD with close monitoring for disease activity resolution prior to consideration of more restrictive diets…” (Jericho H, Capone K, Verma R. Elimination of Cow’s Milk Protein and Gluten from the Diet Induces Gut Healing in “Refractory” Pediatric Celiac Patients. Ann Pediatr. 2021; 4(2): 1082.) CMP-GFD: cow’s milk protein-gluten free diet. Hope you figure it out.  
    • trents
      Symptoms - Ulcers & Cough

      By trents · Posted

      Welcome to the forum, @BlakeAlex! Is this the GI Reset product you are using?: https://inwellbio.com/wp-content/uploads/2023/08/GI-Reset_Info-Sheet.pdf There is a lot of weird stuff in that you could be reacting to. Personally, I would discontinue it as I doubt it's really doing you any good anyway. Getting to the point where you are truly eating gluten free consistently usually involves a significant learning curve as gluten is hidden in the food supply in many ways by manufacturers. For instance, would you ever expect to find it in soy sauce or Campbell's tomato soup? But it's there and a main ingredient. Getting rid of macro sources of gluten is relatively easy. Just cut out bread, cake and pasta. But avoiding the hidden sources and the cross contamination sources is much harder. I am including this article that might be of help to you as a new celiac in getting off to a good start:    Long-term undiagnosed celiac disease inevitable leads to nutritional deficiencies because of the damage done to the lining of the small bowel where almost all of the nutrition in our food normally is absorbed. We routinely recommend that newly diagnosed celiacs invest in some quality gluten-free vitamin and mineral supplements. And I'm talking about more than a multivitamin. We recommend a high potency B-complex, 5-10,000 IU of D3 daily, Magnesium glycinate, and zinc. I suspect your mouth and throat ulcers are nutritional deficiency related. Costco is a good place to get good quality gluten-free vitamin and mineral supplement products at a reasonable price. Are you on medications? May we ask your relative age?  
    • BlakeAlex
      Symptoms - Ulcers & Cough

      By BlakeAlex · Posted

      Hello, I was recently diagnose with Celiac Disease and without realizing, I had every symptom on the list. Now I am moving as fast as I can to a total recovery. I thought I was doing well but I notice my ulcers on my tongue and throat and cough are starting to come back again.  Has anyone experience these symptoms? Also, I am incorporating GI Reset powder for a jump start to recovery.  Thanks in advance, Blake     
    • trents
      Inflammation and Menier’s disease link?

      By trents · Posted

      No. There is no damage done to the gut lining with NCGS.
    • MagsM
      Inflammation and Menier’s disease link?

      By MagsM · Posted

      Hi Trents, Thanks for the feedback. Yes, I do have concerns about NCGS. Would this show up if I did the endoscopy testing?
×
×
  • Create New...