Jump to content

  • 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):

How Many Parents Found Out After Their Children..

key

Recommended Posts

key Contributor
key
Posted

I am just wondering how many mom's or dad's found out after their kids were diagnosed? I have had digestive issues for years. Anemia on and off etc. Anyway, my blood work came back borderline, but I had been gluten-free for a month when I got tested, so I know I have it. I guess he is wanting to do a biopsy, but I don't know if I want to go through that. I would have to start eating gluten again and it makes me too sick.

Of course no one can understand how I could be walking still and be half way normal and still have celiac when my son's symptoms were different then mine. I haven't felt so good though in years. I am SO happy to know what is wrong with me. I am having my oldest son tested too, because he is the shortest kid his age and he had GI symptoms of celiac disease for awhile.

I don't know what to do to make some family and friends understand, but I guess some will choose to never understand!!!

Monica

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

In my case, my grandmother found out after I got diagnosed. She got tested because I was diagnosed. She knew celiac was genetic. Now to get others in the family to also get tested... that could be a challenge :blink:

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Same with us here. Since I know I have celiac disease I tried to get my mom into testing. But it's easier to get a donkey to follow you :lol: . With her it goes like into the left ear and out to the right :P . Well, she will visit me from September 1st - 28th. And as long as she is at my house she will only get glutenfree. Because I will throw everything with gluten out until she arrives. So let's see how she feels after one month. And I try to convince my husband not to buy any toast bread for himself or anything like that. So she will have to eat what we eat. The only chance for her to eat something else, is when we are in Memphis and New York. Other than that she will be glutenfree. Haha!

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

My Mom and my Brother both found out they have Celiac Disease after I was diagnosed.

julie5914 Contributor
julie5914
Posted

I was just diagnosed, so my mom asked her doc about it this week. My mom has diabetes type 1, but it was adult onset because everytime she got pregnant or sick, her immune system would hurt her pancreas, giving her less and less insulin. She has no digestive systems. Unfortunately, the doc lumped the test in with the next round of blood tests that my mom will have, and that isn't until September! I am also trying to get my sister tested. She has digestive systems and has lost some weight recently with no explanation.

phakephur Apprentice
phakephur
Posted

My mother got the blood tests (at my insistence) during her last physical but never got the results; the doc's office didn't call her and she never followed up. She's always regarded celiac as "my thing", something that will never affect her. Here we are a few months later and she's starting to have persistent diarrhea and a rash on both elbows. Although she's beginning to consider the possibility that gluten may be causing her problems, she's pretty adament that cashews are the source of the GI trouble. She's been hemming and hawing about calling to get the results of the blood test. I finally asked her point blank if she just didn't want to know.

My concern is that her symptoms aren't severe enough to compel her to make the leap to gluten-free lifestyle if her test is in fact positive. She said "I'm not going to do all that stuff you do" (with respect to food), and "I can live with the diarrhea". I guess all I can say to her is "read up on the risks of eating gluten if you have celiac, so when you decide to go to Buiscuitville with your friends at least it's an informed decision."

I wanted to demonstrate to her how easy it is in this town to get gluten-free food, so I took her with me to Whole Foods to show her the wonderful gluten free bakery rack filled with stuff from that bakehouse in Morrisville. I told her all about the different breads and scones and cookies and pies. We got there and the damn thing was gone and in its place were charcoal briquettes and grilling tongs. wtf :angry:, I can get tongs at Wal-Mart.

VydorScope Proficient
VydorScope
Posted
I am just wondering how many mom's or dad's found out after their kids were diagnosed? I have had digestive issues for years. Anemia on and off etc. Anyway, my blood work came back borderline, but I had been gluten-free for a month when I got tested, so I know I have it. I guess he is wanting to do a biopsy, but I don't know if I want to go through that. I would have to start eating gluten again and it makes me too sick.

Of course no one can understand how I could be walking still and be half way normal and still have celiac when my son's symptoms were different then mine. I haven't felt so good though in years. I am SO happy to know what is wrong with me. I am having my oldest son tested too, because he is the shortest kid his age and he had GI symptoms of celiac disease for awhile.

I don't know what to do to make some family and friends understand, but I guess some will choose to never understand!!!

Monica

Sounds just like me! :D Cept my son has not yet turned two and celiac disease only sets in after you start them on wheat... around 6-9 months in most cases so I cant say "years" with him.

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

almost 2 years after my daughter and I were dx, my dad's dr's FINALLY told him his symptoms "could be" celiac and he goes "sheesh, my daughter and grandaughter both have this"... BAMMO!!!! He feels much better gluten free

Carriefaith Enthusiast
Carriefaith
Posted
The only chance for her to eat something else, is when we are in Memphis and New York. Other than that she will be glutenfree. Haha!
:lol: that is funny
key Contributor
key
Posted
  • Author

Vincent,

SOrry if I confused you. My son that got diagnosed it actually only 15 months old. My other son is 6 and his main symptom is short stature, but he had GI symptoms for a year and then they seemed to go away. SO I am having him tested too.

Monica

key Contributor
key
Posted
  • Author

Yeah, it is funny how some people would rather be miserable then find out something is wrong with them. My mom has SO many symptoms and I am convinced she has it too, but she is stubborn as a mule! She told me if my tests came back positive then she would get tested and now that they have, well we will see if she goes. I feel so much better, I would rather never eat out again! Who wants to feel cruddy your whole life, I certainly don't! I guess it is their choice. I keep telling my mom to try the diet and she lasts a day and then cheats.

Monica

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted
wtf :angry:, I can get tongs at Wal-Mart.

:lol: tongs at WalMart. THIS is funny...

plantime Contributor
plantime
Posted

None of my kids have been diagnosed, my dad has no gi problems whatsoever (and absolutely no sign of celiac! :D), but both of my sisters have manymanymany of the symptoms! Neither one will get tested because they do not have constant diarrhea or weight loss. I was just talking to my younger sister yesterday about it, she kept saying she has none of the symptoms, but then in the next breath she told me about her B12 shots, constant gut pain, neurological disorders, and so on. Grrr!!! :angry: I finally told her that I believe Mom died from untreated celiac, and that I would not quit nagging her to at least get the blood test done until she emails me the results! I love my sisters, and I only want what's best for them, including a life without gluten if they are celiacs! B)

Guest nini
Guest nini
Posted

phakefur, I ran into the same thing at Whole Foods, the gluten-free bakehouse Rack was GONE!!! I pitched a fit until someone pointed out that they moved all the gluten-free bakehouse foods to a Freezer because they had too many people bringing it back because it had gone bad really quickly. Ummmmm no preservatives, yeah... gonna go bad quick... it's ok in the freezer though, it thaws out just fine, they freeze it before they ship it out anyway.

CateK Newbie
CateK
Posted

When they did the blood test on my son, I started researching. Funny, I had a lot of those odd symptoms that could have been attributed (and were) to other problems (like arthritis, acid reflux, migraines...) hmmm. So, the whole household went gluten-free. It seems to make no difference for my older boy nor for my husband... but man did young one and I see some major differences!

I'm not even going to bother with the blood tests and such for me. I now KNOW what is going on in my innards. And while my son's blood tests came back "inconclusive", we are proceeding with the idea he probably has celiac disease or is at least gluten intolerant. In any case, we both feel much better.

phakephur Apprentice
phakephur
Posted
they moved all the gluten-free bakehouse foods to a Freezer because they had too many people bringing it back because it had gone bad really quickly.

Thanks Nisla. I forgot they had done that in the Raleigh store when I was looking for bread in Chapel Hill. I guess it's a company wide thing. Now I'll have to nuke my brownies in that filthy microwave when I stop in there for coffe, not to mention that it was a lot easier to scope out single celiac men when the g.f. rack was out in the open B)

cdford Contributor
cdford
Posted

Jenn was diagnosed years after I was fully disabled with what we now know were long term complications from the celiac disease. When she was diagnosed, my doctors just shook their heads at a possiblity so simple that they had overlooked in me. Sure enough, one set of blood work and I was diagnosed as well. Now if I can just get some other very symptomatic family members to give in and get checked...

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. Scott Adams
      - Scott Adams replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Iron loss and potential celiac.

      These articles may be helpful:
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      5

      Skin issues

      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph, by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some...
    3. N Young
      - N Young posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Frustrated with Providers

      I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time. Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten...
    4. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Iron loss and potential celiac.

      "Risk free genetically"? Very low risk, actually. But, we are still learning about the genetics of celiac disease. Speaking of milk, some studies show that CMP (Cow's Milk Protein) can damage the small bowel villi like celiac disease does. Also, some meds (NSAIDS, Olmesartan - a blood pressure med) and some infections can also blunt SB villi.
    5. trents
      - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Test interpretations

      @Aretaeus Cappadocia! The post you were looking for about omeprazol acting as an anti-inflammatory/immunosuppressant was made (yesterday, I believe) by knitty kitty. Current guidelines for the gluten challenge prior to an endoscopy/biopsy of the small bowel is the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat flour...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,116
    • Most Online (within 30 mins)
      10,442
    DiDi53
    Newest Member
    DiDi53
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Iron loss and potential celiac.

      By Scott Adams · Posted

      These articles may be helpful:    
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph,  by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some pills ! I made the mistake of saying Im waiting on Infectious disease. She asked how did I get referral and I said I did it online.The next day I checked the status and it was denied! I did get  a referral to the dermatology office i went to last year that over charged me and did a biopsy on me stating inconclusive! I went to another dermatologist and he stated I should see Infectious disease at place i put in referral. With that I contacted that dermatologist and waiting to see if he thinks dermatology or Infectious disease is the route.I do have appointment for dermatology next week.Until then i did purchase Zahler paraGuard advance intestinal  flora support  from Sprouts. Im also very alarmed that the fact celiac isn't addressed properly infact its downplayed. When I had my son tested for HLA-DQ2 and it came out positive because he is eating everything and he is extremely skinny but he isn't dealing with severe diagestive issues because thats all he knows NOW or yet because he is still young 21.I too didn't know any difference when i was that age because thats all we know.Life changes will get him in latter years im afraid because what im dealing with.That scares me.The specialist we went to was only about congestion he is getting.He is getting congestion because he is eating what he isn't supposed too! Zero talk about celiac and HLA-DQ2 positive. Only talk was he is congested because we live in the Valley! They wanted to do surgery! I did write again to our district leader considering when I did call, the guy stated he knew all about celiac. I really wanted to tell him NO YOU DON'T but held my tongue. For my skin sores the cream given didn't do anything because ive also had in past.Ive been putting liquid vitamin c on it and taking vitamins which is making a little difference just with the last few days of doing.
    • N Young
      Frustrated with Providers

      By N Young · Posted

      I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time.   Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten challenge. I went on an elimination diet and found relief on the Dermatitis within a month. I have no doubt that I am celiac and very sensitive now. Now my issue is that I changed physicians due to retirement and he performed a blood test and included a celiac test. I was very upset because I did not request the test and had not been eating gluten for 25 years. Of course the test was negative.  My question - Will this cause me any issues with health treatment if my records now have that I dont have celiac? I like this physician and I am appalled that he performed the test. (he told me his brother is also celiac).  I feel that we are still living in the dark ages. I dont want to cause problems because I rarely need health treatment since I live a fairly healthy lifestyle.  Since I am at this age and been through so much getting to this point am I being unreasonable for being upset? I am not expecting to see this physician for another 2 months.  Need to know if I can expect issues with future treatments. How can a physician not know about the gluten challenge this day and age?   
    • trents
      Iron loss and potential celiac.

      By trents · Posted

      "Risk free genetically"? Very low risk, actually. But, we are still learning about the genetics of celiac disease. Speaking of milk, some studies show that CMP (Cow's Milk Protein) can damage the small bowel villi like celiac disease does. Also, some meds (NSAIDS, Olmesartan - a blood pressure med) and some infections can also blunt SB villi.
    • trents
      Test interpretations

      By trents · Posted

      @Aretaeus Cappadocia! The post you were looking for about omeprazol acting as an anti-inflammatory/immunosuppressant was made (yesterday, I believe) by knitty kitty. Current guidelines for the gluten challenge prior to an endoscopy/biopsy of the small bowel is the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat flour bread) for at least two weeks prior to the day of the procedure. @Ginarwebb, your tTG-IGA >250 would seem to be a pretty high test result, though to be sure of that statement, I would need to see what the lab used for a "normal" range. Do you have that number also? Different labs use different scales. There isn't an industry standard yet. The tTG-IGA is the centerpiece of celiac blood antibody testing. Your ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER (aka, "EMA") is positive as well. This is an older test, and a relative expensive one, compared to the tTG-IGA which has largely replaced. But the EMA is still ordered by some docs and is highly reliable. That both of them agree in your case and this is strong evidence that you have celiac disease. Concerning the ENDOMYSIAL ANTIBODY TITER (aka, "total IGA") being high, there are two things of importance. First, it tells us you are not "IGA deficient" such that your tTG-IGA test result is reliable. Second, a high total IGA test score can suggest other health concerns, some of which are serious. It can also mean nothing. Talk to your doctor about this. I would also suggest you research the implications of a high total IGA. In addition to IGA celiac diagnostic tests there are also IGG tests which are handy when total IGA is sub normal.  Here is an article outlining the various tests that can be run for diagnosing celiac disease:  
×
×
  • Create New...