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Anyone Have A Mom And Dad With Celiac?

Chakra2

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Chakra2 Contributor
Chakra2
Posted

My mom and I are both in the process of getting diagnosed with celiac disease. Just wondering how uncommon it would be for both my mom and my dad to have celiac. Wondering how much info I should try to pass on to him (mom and dad are divorced).

Chakra2

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Since it's genetic I think they both should get tested. I'm still trying to convince my parents to get tested. I suspect they have it because between them they have several diseases that go hand-in-hand with celiac, but they haven't been sick enough to want to get tested. I will keep working on them, however. I've only been gluten free for 7 months, so they might think this is just some fad I've started to follow. Once they see that this is my lifestyle for good they might start taking me more seriously.

Chakra2 Contributor
Chakra2
Posted
  • Author

It took awhile to get my mom to be open to testing.

I'm about 7 months gluten-free too! How are you feeling? I felt a huge improvement within the first 2-3 weeks, then roller coastered through months 2-5 figuring out the diet and other intolerances, and just in the past 2 months have finally felt back to normal. I love feeling like a human being again!

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

It took awhile to get my mom to be open to testing.

I'm about 7 months gluten-free too! How are you feeling? I felt a huge improvement within the first 2-3 weeks, then roller coastered through months 2-5 figuring out the diet and other intolerances, and just in the past 2 months have finally felt back to normal. I love feeling like a human being again!

I'm doing great, as long as I don't get glutened. I sort of did things backward, but it worked out for me. I cut out all possible allergens--all grains, all dairy, all sugars, and even most fruit for a month. I ate nothing but grilled meat and veggies then I started to add things in one at a time to see how I reacted. My reaction to wheat led me to suspect celiac and when I looked into it further, I found it matched so many of my symptoms perfectly. It just made sense. So I found myself a few months gluten free (without knowing that that's what it was called) and I couldn't get the testing done at that point. So now I advocate everyone get tested before trying the diet. I wish I had known to get tested first, but there's no way I'm going back on gluten for the testing. It's not worth losing more of my health.

Skylark Collaborator
Skylark
Posted

Mom has non-celiac gluten intolerance. Dad eats wheat fine.

ravenwoodglass Mentor
ravenwoodglass
Posted

My kids do. I also have two copies of the same gene and my Mom was not diagnosed but had all the symptoms and my Dad, from what I remember, had some of the neuro ones and had the celiac 'beer gut'.

Roda Rising Star
Roda
Posted

and my Dad, from what I remember, had some of the neuro ones and had the celiac 'beer gut'.

The "beer gut", oh my gosh, sounds just like my dad. Granted he does drink beer, but no matter how much weight he looses he has this belly that just sticks out and is very disproportionate to the rest of his body. He finaly got tested and his doctor told him everything was fine and he does not have celiac. However when my Mom asked about their actual results the doctor was snooty and would not tell them. He said to her "I wouldn't steer you wrong you are fine." Yeah like I believe every word he tells them. He told my mom that on her last bone density test that she didn't have osteoporosis any more, but she shrank more! :huh: I told her to go get a copy of the reoprt from x-ray, and low and behold it was worse than the last one. GRR! So the point is Dad will believe this guy. He has alot of signs that point to celiac especially the belly thing, very low cholesterol despite being overweight (I had abnormally low triglicerides etc too, all normal now) and alot of what I call neuro things. He is getting problems in his feet that another dr. (neurologist) has him taking and increasing neurotin and B12 for and it is not improving. My dad believes since his tests were negative he is in the clear. I found out last summer that my Dad's great great nephew who is a toddler by now and his full cousin's daughter are both celiac. So it does run in the family. I highly suspect his brother has it too. He has suffered since a child with psorasis and bad skin and I am pretty confident my brother has it also. He has sarcoidosis which thankfully went into remission 6 month after he was diagnosed in 1992, but has had an awful rash since then and LOTS of stomach issues. He won't get tested and probably never will. He said he didn't care if he was because he wasn't ever going to give up the things he loves. I guess he hasn't gotten sick enough yet. He already avoids dairy as much as possible because it bothers him. I don't really bring it up any more in the context that I think they should try the diet or get tested. It's their choice to make. I just focus on me and they are pretty supportive of me.

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T.H. Community Regular
T.H.
Posted

I would definitely pass that info. on. 1 in 22 of that group (1 degree away from a celiac, like sibling, child, parent) are postive as well.

For me, my dad was diagnosed a few years back and told me it was 'like an allergy,' so I didn't look into it much. I slowly started getting illness after illness, worse and worse, and then I found out I had it as well. I went and pestered everyone to get tested, and my brother and daughter came back positive. My son, who we took off gluten anyway, has problems that have resolved since going gluten free.

Now, talking with relatives, we've found many cousins who have physical problems, including many gut symptoms, that their doctors have told them for years are 'just due to stress.' They're thinking of getting tested, now too.

I think it's DEFINITELY worth looking at.

My mom and I are both in the process of getting diagnosed with celiac disease. Just wondering how uncommon it would be for both my mom and my dad to have celiac. Wondering how much info I should try to pass on to him (mom and dad are divorced).

Chakra2

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      Seeking advice on potential gluten challenge

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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
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