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

Finally Making The Connection


MRM

Recommended Posts

MRM Apprentice

hi everyone. i've been lurking for a few weeks and have learned so much from reading everyone else's experiences. since there's not an introduction board i guess this is the best place to start.

i suspect i've had life long issues with gluten/wheat. as a child i had chronic stomach aches. i spent a few years bouncing around from doctor to doctor and never finding the cause of my pain. i even had a trip to the ER with no known cause for my pain. by the time i was in second grade i was on Zantac daily. it didn't really help and i believe i eventually just got used to the pain. other signs i remember from my childhood include craving/eating dirt, reflux, severe dark circles aka "allergy shiners", keratosis pilaris, behavioral problems and chronic headaches. i would often wake in the middle of the night with severe headaches as a young child. my mother knew something was off and tried taking me off dairy. she had the right idea but the wrong trigger. i've also had chest pain and palpitations all my life. again, i've seen many doctors and none have found anything wrong with me.

it wasn't until about 2 years ago that i learned about Celiac Disease. my daughter was born in July 07. she had eczema and GI issues and under the guidance of my naturopath i started an elimination diet for her and i(i was breastfeeding at the time). we were off the top 8 allergens which included wheat/gluten. despite have a young baby and working full time i had never felt better in my life. about a year later we moved across country on very short notice i fell off the diet wagon. about 6 months later we had my daughter tested via IgG testing because we were still having issues. she showed a mild sensitivity to wheat but not gluten. we(daughter, son and i) all went back off wheat/gluten. again i felt great. i wasn't bloated every night, my allergies were tolerable. i didn't have near daily headaches. it was great but eventually we went back to eating wheat/gluten and have been for many months.

fast forward to this month. my son(age 6) has been having some stomach issues since he started school in the fall. this also happens to be when we started eating wheat again. we just had some stool samples sent out for him through our doctor. i'm not sure what they're screening for but our doctor knows i'm getting ready to take us all of gluten again. he's very petite for his age and has always been under the 25% for height and weight. he also has behavioral problems nearly identical to mine and allergy shiners. i will be asking to have him screened for celiac disease in the very near future.

while gearing up to go gluten free i've been able to avoid gluten for days at a time and have noticed that i react to wheat/gluten very quickly when i do have some. i get a headache almost instantly, waves of pressure in my head and sinuses and often get heart palpitations. i also have some severe fatigue and can barely get through the day without taking a nap with my daughter despite 7-9 hours of sleep at night. in the last month i've had allergy testing, both skin and blood, and a Celiac blood test. allergy testing was negative for wheat and the Celiac testing showed a reaction but within the normal levels. i guess my next step is to push for more blood work and a biopsy before i kick full swing into our gluten free diet. hopefully i will have some answers soon. thanks for reading all this.


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



Celiac.com Sponsor (A8-M):



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. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Pain in the right side of abdomen

    2. - knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    3. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Second chance

    4. - cristiana replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,564
    • Most Online (within 30 mins)
      7,748

    Greg C
    Newest Member
    Greg C
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Heatherisle
      Hi  Daughter finally had her B12 checked and her level was 30, normal range 180-200 so GP has prescribed medication for 4 weeks then further blood test so that probably accounts for how awful she’s been feeling recently. Folate was 2.2 just below the range of 3.0 - 20 so will need folic acid. Think iron levels were borderline but don’t know the numbers. Not sure if it was Ferritin levels they did. History of haemochromatosis in family , my husband has it and other daughter is a carrier. She still has a few more blood tests to be taken including Vit D levels. Has had deficiency in that last year and had 6 month course as had back pain and tingling in feet and hands. Anyway thank you everyone for all your previous replies and help!!!!
    • knitty kitty
      I found some articles that illustrate the immune reaction to casein and gluten. Bovine milk caseins and transglutaminase-treated cereal prolamins are differentially recognized by IgA of celiac disease patients according to their age https://pubmed.ncbi.nlm.nih.gov/19290628/   Gliadin and Casein Metabolism: Synthesis of Gliadomorphin and Casomorphin and Their Biological Consequences https://www.researchgate.net/publication/397908713_Gliadin_and_Casein_Metabolism_Synthesis_of_Gliadomorphin_and_Casomorphin_and_Their_Biological_Consequences   Effects of milk containing only A2 beta casein versus milk containing both A1 and A2 beta casein proteins on gastrointestinal physiology, symptoms of discomfort, and cognitive behavior of people with self-reported intolerance to traditional cows’ milk https://pmc.ncbi.nlm.nih.gov/articles/PMC4818854/#:~:text=Results,lactose tolerant and intolerant subjects.   Casomorphins and Gliadorphins Have Diverse Systemic Effects Spanning Gut, Brain and Internal Organs https://pmc.ncbi.nlm.nih.gov/articles/PMC8345738/   Brain Opioid Activity and Oxidative Injury: Different Molecular Scenarios Connecting Celiac Disease and Autistic Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC7407635/  
    • Mari
      Ijmartes71 I  son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog  , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties abd think more clearly. .Stop taking your herbs for at least one week because some of them will have side ellectsif you take them too long. You can add them back if you don't notice any good changes. Be more careful about being strictly gluten free.  
    • cristiana
      Just to say that I too was hesitant to come off dairy products completely @dsfraley.  Milk, yoghurt and soft cheeses definitely caused bloating.  This bloating gave me rib and pelvic pain, and I remember  the pain was so horrible at times it was almost a sick feeling., kind of like the sort of aches you get with flu.   Milk, yoghurt and soft cheeses also gave me diarrhea, but I noted I could still eat small amounts of hard cheese like cheddar without any issues. Re: milk, my gastroenterologist told me at that time that I could just by lactofree products, and should be fine, but when my gut was still very damaged they went right through me regardless. Thankfully I am able to tolerate milk very well again, although I have noted that too much of it can have a slightly laxative effect. The other thing that made me feel off were heavy iron supplements, which contributed to bloating and diarrhea.  In the end a GP told me to take ferrous gluconate, which is a much gentler supplement, with water an hour before breakfast in the morning.  That was helpful.  If your son is supplementing  (which needs to be under medical supervision as too much iron can cause issues) Floravital fruit syrup is another alternative, but make sure you don't buy Floradix as it contains gluten. Lastly, all oats, soya products and certain pulses also made my stomach sore.  Apart from the oats (which need to be certified 'pure' aka gluten free ones) I was able to eat these things again some months after adopting a gluten-free diet. I would say keeping a food diary might be worth a try, noting any negative symptoms following eating.  Patterns start to emerge which might otherwise be difficult to identify.
    • trents
×
×
  • 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.