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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Many Parents Found Out After Their Children..
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17 posts in this topic

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

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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:

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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!

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

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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.

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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.

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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.

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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

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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
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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

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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

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wtf :angry:, I can get tongs at Wal-Mart.

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

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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)

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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.

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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.

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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)

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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...

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    • Newbie: mother to coeliac kids
      Are there any foods, like broth, that don't make your son feel sick?
    • Newbie Mom - How is my son feeling?
      I agree. As an adult its a little easier to withstand the rolling of eyes and exaggerated sighs from people who think you are over reacting and being too fussy.  My youngest has anaphylaxis to fish and seafood and people are incredibly understanding and careful - but it seems celiacs has become a "fad" due to gluten intolerant people removing credibility from true celiacs.  Adults can argue but kids are vulnerable. Socially its really isolating for them.    I totally relate to the waiting on endoscopy. For my very sick 12 year old the 8-9 weeks we waited for sheer hell and I felt I was feeding him rat poison. Now my 17 year old is waiting on his, booked for later this week.  Its a total nightmare waiting knowing you can start the healing if only you could stop feeding them gluten.  But I figure for future reference, having a solid diagnosis via biopsy is important. Good luck to you and your son.
    • Newbie Mom - How is my son feeling?
      Hugs to you and your daughter. My son and I are in the same boat, or at least,  paddling alongside your boat.  At their age being scrupulous about their diet is not only incredibly hard but socially isolating. Adults consider celiac people to be a pain so imagine what their young friends think.  Feeling so unwell and having no energy adds to their distress. And the thing is - I don't think at that age that they really understand that even the slightest bit of gluten will set them back badly.  I know my son is convinced one sweet won't matter. It really really sucks.  
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      No one in my wider family gets it, although my sister is certainly trying to understand. She gets that I will bring all food for my coeliac kids when we come for meals and is okay with that.    For other social events, I will suggest the meal is at my place so I can control the gluten.  But my biggest battle is my children's father (my ex husband) who refuses to get it, and thinks I am being stupid and trying to prevent him seeing V.  I have offered that V can visit but not eat nor stay the night.  Ex does not have the means or the brains to manage gluten free meals.    At this point it looks like I may need to go to court to get an order to prevent V from being forced to go and get glutened. I really really hope to avoid this, but its not looking good. 
    • celiac disease is psychosomatic
      I guess it's the "natural flavoring" which throws me off. It could or could not contain gluten and it's in so many products. I haven't been on a gluten-diet for as long as you...6 years. I may have bee undiagnosed and untreated for more than 25 years since i had signs that went back to chidhood. Yes, I have balance/anxiety/neuro issues. I know anxiety is connected to damage in intestines, but I don't know for sure if celiac causes balance/neuro issues. I was already tested for brain ataxia, but I didn't get too far on that. Well, there wasn't an exact test, but the neurologist noted that I was walking straight or something on those grounds so I must not have it. I know studies have shown Transglutaminase 6 antibodies indicate gluten ataxia, butthat test is not yet available to the public.  
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