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

Do I Have Celiac?

thepeach80

Recommended Posts

thepeach80 Rookie
thepeach80
Posted

Weird mish mash of questions, so bear with me please. I don't remember when sx started, first bad sx started in 2007 around my daughter's first birthday. Went gluten-free, easy enough as we were doing a gluten-free trial for my son then too (3 of my 5 kids have had wheat issues in infancy/toddlerhood) sx went away. Came back randomly, dx with IBS in 2009 and it went on for weeks. Had had blood work in early 2008 for Celiac, but have no idea what they tested for or what the results were other than they said negative. Have done on and off wheat free (they could handle oats) diet from 2005-2010. My father has worsening Crohn's and aunt has Fibro. Seem to have a strong hx of gastro issues as well as allergy issues in my own children.

 

Had gallbladder issues in 12/2012. Saw GI 1/13 who recommended scope as he wasn't sure based on my sx it was gallbladder, or at least that wasn't all of it. Ended up having gallbladder removed 2/13, 5 days before scheduled scope. Ended up having scope 5/14 showing moderate damage to stomach lining and intestines leaning towards Celiac. Followed it up with tTG testing and was told it was negative and I did not have Celiac. I decided to go gluten free anyways last June and haven't looked back. I can tell a marked difference when I accidentally have gluten now. Things I lived for for years that I didn't think twice about until I stopped gluten. Anyways, tTG was 5. I don't know if I've had any other blood work besides that or not, the anti-gliadin etc. 

 

All of that, would you feel comfortable saying Celiac is the diagnosis? What about the kids, at least the older ones. They are 11, 9, 7, 5, and almost 2. Talk to their ped about testing via blood? I read there's a University of Chicago link I should check, correct? Is there a difference in testing them if I'm not Celiac vs just sensitive? I'm assuming so.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

It sounds like you have Celiac.

You can ask the doctor for copies of all your labs. It is important to keep track of them.

Talk to your Ped about your endo results and improvement with the gluten-free diet. Perhaps test only those kids with symptoms to start?

Anemia was my only symptom for celiac disease. My husband is not diagnosed formerly and has been gluten-free for 13 years. We did not test my daughter until we were sure the Affordable Healthcare Act was really in place since we are self-employed and did not need her to be uninsurable, like I was. She had no symptoms, no anemia and her CDs tests were negative. She will get re-tested every few years. So, there is no huge rush to test your kids if they do not have symptoms.

thepeach80 Rookie
thepeach80
Posted
  • Author

I just realized my GI now has a patient portal so I can I have access to my past blood work. I just signed up and sent a message to add my past blood work on there so I can see what I've been tested for and the results. Is it worth doing the gene testing on myself and the children? I have 2 kids I am more concerned about than the others.

cyclinglady Grand Master
cyclinglady
Posted

The gene test is a good tool used to rule out celiac disease when celiac disease blood tests or biopsies are inconclusive. Some 30% of folks carry the genes, but only a small amount (less than 1%??) develop celiac disease. You can see that just the gene test is not very helpful.

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. trents
      - trents replied to Rejoicephd's topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part....
    2. trents
      - trents replied to xxnonamexx's topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one...
    3. Scott Adams
      0

      Espresso Sea-Salt Brownies (Gluten-Free)

    4. Rejoicephd
      - Rejoicephd posted a topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

      Hey all Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium - nearly too low potassium - nearly too low chloride - high CO2 - low anion gap This is now after being nearly gluten-free for over a year (although I admit I make...
    5. xxnonamexx
      - xxnonamexx posted a topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,319
    • Most Online (within 30 mins)
      7,748
    Mamadook07
    Newest Member
    Mamadook07
    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

    • trents
      Basic metabolic panel results - more flags

      By trents · Posted

      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part. It depends on the particular parameter (some are more important than others) and it depends on how far out of range it is. Docs also look for trends over time as opposed to isolated snapshots of this or that being out of spec at any given time. Our body chemistry is a dynamic entity. 
    • trents
      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      By trents · Posted

      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one of them or all of them. It just means it's common. You may not have a problem with soy at all. Celiac disease is not a food allergy. It is an autoimmune response to the ingestion of gluten that creates inflammation in the small bowel lining that, over time, damages that lining.
    • Rejoicephd
      Basic metabolic panel results - more flags

      By Rejoicephd · Posted

      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      By xxnonamexx · Posted

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
×
×
  • 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.