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 Celiac.com!
    eNewsletter
    Donate

What Do I Do With This Information?

JustMe75

By JustMe75
in Coping with Celiac Disease

Recommended Posts

JustMe75 Enthusiast
JustMe75
Posted

I have been gluten free for 3 and a half months and my symptoms have gone away. My celiac blood tests were negative along with the blood tests for food allergies but I tested positive for the HLA DQ2 gene. My oldest daughter (15) is starting to have digestive symptoms similar to what mine were at her age so we had her tested and her celiac blood tests were also negative and, with the exception of a dairy allergy, her other food allergies were negative too. My youngest daugher (11) isn't having digestive symptoms but has a weird rash on her neck that won't go away so I had them test her too. Same thing..... no food allergies, negatiive celiac tests. Well they both have the HLA D2 gene too. The older one is gonna stick to the diet because she wants to feel better but what should I do about the younger one? My husband along with my ex (their dad) asked why put her on the diet if she isn't having symptoms. Other than the rash, she has some concentration issues and learning problems and I think it might help her her with that. Plus I didn't have any symptms at her age and why wait until she is sick to make her better why not prevent it? It would be nice to have a gluten-free household but thats not gonna happen here. We are a blended family and my husband would never agree to it. So, his kids will be eating normal foods and I am afraid that I will be wasting my time trying to get my youngest to be gluten-free. I also have a son (13) who has severe speech delays and ADD who would benefit too (haven't had him tested yet) but without the support is this possible to do? Their dad did agree to try it if I think he could possibly get off his meds. So its a start.

What should I do? Any advice? I think I am beginning to sound like a gluten obssessed freak! Do I think everyone has it? Do I think gluten-free is the cure for everything?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


loraleena Contributor
loraleena
Posted

The blood tests have a lot of false negatives. I would have them tested through Enterolabs for gluten intolerance. Intolerance can reak havoc on our bodies even in the absence of celiac. It is a stool test.

Link to comment
Share on other sites
sneezydiva Apprentice
sneezydiva
Posted
What should I do? Any advice? I think I am beginning to sound like a gluten obssessed freak! Do I think everyone has it? Do I think gluten-free is the cure for everything?

I chuckled a little at this, because I've been the exact same way. I'm actually not celiac, but I'm convinced my DH and his mother are. Some of DH's symptoms have gotten better eating gluten-lite, since I won't cook a gluten meal. My feeling is it doesn't hurt to try the diet. You have the gene tests that show your family is susceptible. I'm trying to get DH to try the diet, but he isn't quite ready yet.

In our household, I still buy DH bread, cereal etc... but dinner is gluten-free. DH doesn't mind this. (Though sometimes, he'll make himself a piece of toast to eat with dinner.) I'm discovering there are so many "normal" meals that are naturally gluten-free. I bet you could cook some for a few days without saying anything, and your husband wouldn't even notice. Eventually, though, he'll want some bread with dinner, and you can easily oblige and just not let the gluten-free eaters have it.

Link to comment
Share on other sites
gfpaperdoll Rookie
gfpaperdoll
Posted

Just a guess here, but if you have only one DQ2 your other gene could be DQ1, which is gluten intolernace gene, which is really just worse than plain celiac which mainly just affects the gut. With the DQ1 gene it always seems to go along with the neurological problems, ADD, ADHD, Migraines, depression, temper tantrums in children. Also, the people that I know that have DQ1 are very sensitive to gluten & most will test negative on the blood test, but not always. My double DQ1 sister tested positive via blood test, & I have a double DQ1 friend that tested positive via endoscopy.

So yes, gluten-free diet should help all your kids live productive, happy, healthy, energetic lives, what more could we want for our kids. This gluten-free diet will give your kids a great advantage in life.

Personally, I would have a gluten-free house, if my hubby could not hack it, he would find himself packing...

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,074
    • Most Online (within 30 mins)
      7,748
    Robert Noah
    Newest Member
    Robert Noah
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Nacina
      14 year old with Celiac & EOE still suffering...

      By Nacina · Posted

      Well, that's a big question. When he was seeing the nutrition response testing dr. that changed each time we went in. He hasn't been seeing him regularly for theist ten months. When he had a horribly week in March I started him back on the 4 that were suggested to keep him on. Those are: Standard Process Chlorophyll Complex gluten-free, SP A-F Betafood gluten-free, SP Tuna Omega-3 Oil gluten-free, And Advanced Amino Formula. He also takes a one a day from a company called Forvia (multivitamin and mineral) and Probiotic . Recently he had to start Vitamin D as well as he was deficient.  
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      This forum might be the last hope I have in my life. Please I beg you

      By knitty kitty · Posted

      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      This forum might be the last hope I have in my life. Please I beg you

      By BluegrassCeliac · Posted

      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
×
×
  • Create New...