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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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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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