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

Well, Some Tests Are+

pricklypear1971

Recommended Posts

pricklypear1971 Community Regular
pricklypear1971
Posted

Doctor just called and some of my son's Celiac panel is positive.

Mother effer. Not what I wanted to hear for him.

I'll get more info next week.

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

Well at least you will be able to support him. I found at first having a child with celiac more challenging than just myself. Now that the youngest one has been gluten free for a year it is a lot easier. He has really come around and has accepted it. He is a trooper. He will be 7 tomorrow and navigates pretty good for a little guy. Keep us posted on what else you find out. HUGS!

pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

Thanks.

This is further complicated by him having Thalassemia trait (it's assumed trait, dx is by elimination and a group of nonspecific tests). He also appears anemic , which can also be Celiac (or Thalassemia). I'm wondering if we need a genetic test for that now, too.

Sigh.

Di2011 Enthusiast
Di2011
Posted

Thinking of you pricklypear :( From what I have just read Thalassemia is even less known, undiagnosed etc than celiac/gluten intolerance. I hope you have a good doc to help through the coming days/weeks/months. You remember to get those test results and publish here. "some" positive sounds like positive yes?

pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

Thinking of you pricklypear :( From what I have just read Thalassemia is even less known, undiagnosed etc than celiac/gluten intolerance. I hope you have a good doc to help through the coming days/weeks/months. You remember to get those test results and publish here. "some" positive sounds like positive yes?

Thanks. Thal trait is actually very common. But it is dangerous not to know you have it since it can mess with bloodwork and you appear anemic. It makes the Celiac thing a nightmare...since you don't really know of you're anemic and absorbing it is an issue. There's a genetic test for the trait and I think we need to do it so we know exactly what we're dealing with. Giving a Thal person iron can be deadly if it's not needed. Unbelievably, he's a very difficult case....

I don't know what came back +, if it's iga only then it could be an autoimmune reaction or another intolerance. We are doing an endoscopy and now have to find a doc, plus keep him on gluten which is a challenge since its school break and he's "gluten light" or gluten-free now at home.

His genetic test was mildly suggestive if Celiac genes - dont don't know if I gave him everything I have or if hubs contributed something.

pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

Well, today is the doctor's appt. I am awake at 3:30 am and my brain is going 20o mph.

We haven't told him where we're going or that a test is +. We've been discussing what to do, and thinking of the challenges ahead. So, we have headaches.

Y'all will love this one - my stepson is on town and has shown up sick/recently ill AGAIN. Talks about throwing up, getting sick a lot. Still has constant mouth ulcers. And says wheat products make him feel weird and doesn't like them. WTF????????

We always assumed stomach upset was milk with him - he was truly allergic as a small child. Now he just has a problem with lactose (according to him).

But after being around him for 2 days he spends half his life on "urgent" bathroom visits.

I mean holy crap. Seriously?????

This kid developed migraines as a teenager, and a jaw bone deformity, and is skinny as a rail and shorter than expected based on childhood size (he was a tall, well built kid and now he's skinny and just not physically "balanced" - hard to describe other than you'd never think childhood pics of him were him....

I'm just rambling but anyway you get the picture. It's just been a slap in the face.

frieze Community Regular
frieze
Posted

Well, today is the doctor's appt. I am awake at 3:30 am and my brain is going 20o mph.

We haven't told him where we're going or that a test is +. We've been discussing what to do, and thinking of the challenges ahead. So, we have headaches.

Y'all will love this one - my stepson is on town and has shown up sick/recently ill AGAIN. Talks about throwing up, getting sick a lot. Still has constant mouth ulcers. And says wheat products make him feel weird and doesn't like them. WTF????????

We always assumed stomach upset was milk with him - he was truly allergic as a small child. Now he just has a problem with lactose (according to him).

But after being around him for 2 days he spends half his life on "urgent" bathroom visits.

I mean holy crap. Seriously?????

This kid developed migraines as a teenager, and a jaw bone deformity, and is skinny as a rail and shorter than expected based on childhood size (he was a tall, well built kid and now he's skinny and just not physically "balanced" - hard to describe other than you'd never think childhood pics of him were him....

I'm just rambling but anyway you get the picture. It's just been a slap in the face.

how old is stepson? and remember that he could have gotten the genes(if he is indeed celiac) from his mom. good luck

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

So, an update...

Genetics: he didn't get my half Celiac gene but did get a half gene from Dad. He got my half Dq8 "autoimmune risk gene" and my weird half dq2 gene that I never see mentioned anywhere.

Celiac panel: negative and he isn't iga deficient.

Vitamin panels - deficient in D, low C, and K may be low ( he wasn't fasting, will need to retest).

General metabolic panels, etc. suggest he was starting to get sick (he did have a virus 6-7 days after blood work was drawn), and possible digestive issues (perhaps beginning of leaky gut).

So, we're going to try specific supplaments for 3 months or so, a month gluten-free, milk free trial in March during a school break, and take it from there.

His iron/ferritin is consistent with Thalassemia trait B - his iron stores are low normal....

So, no scope for now. Just a trial in March and more blood work to check deficiencies and then more Celiac bloodwork in a year.

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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread

      Your concern about certified gluten-free cricket powder is completely valid, as cross-contamination in both feedstock and processing is a real issue. Currently, the availability of certified gluten-free options is limited, but brands like Chapul and Entomo Farms, which I believe have offered products processed in dedicated facilities and labeled gluten-free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,541
    • Most Online (within 30 mins)
      7,748
    Sally Garber
    Newest Member
    Sally Garber
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.