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Celiac With Siblings


catfish

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catfish Apprentice

My next oldest sister has IBS symptoms similar to my own, younger brother gets terrible migraines, and my oldest sister can't gain weight plus I just found out from my mother that my oldest sister was taken of wheat when she was an infant because she had a bad reaction to it, but then the reaction went away so they put her back on it again. Add to this the fact that her daughter has seizures and they don't know why! I think all my siblings should get checked for Celiac since I had positive blood tests and the new diet seems to be showing some improvement, but my siblings all seem to want to stick their heads in the sand and say, "Not me, I can't have that!"

Now I might be wrong, but isn't gluten intolerance always a lifelong condition? Why would the doctors suggest putting my sister back on wheat again? Just because the Diarrhea went away doesn't mean she isn't still sensitive, right? Maybe that was the state of medical knowledge back then, this would have been oh, 35-40 years ago.

So anyway, I wish that I could convince them to get a blood test or something, but I think the prospect of facing a lifestyle change like that is too much for them to face. I guess when their symptoms get severe enough maybe they'll get checked out! But I was wondering, I know that Celiac is a genetic thing but does anybody know the odds for a sibling of a Celiac to be a Celiac? Maybe hard numbers will help convince them to get checked out! :unsure:


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lovegrov Collaborator

Off the top of my head the odds of any first-degree relative having it are 1 in 33, but it becomes much, much more likely if a relative has symptoms. Both of my siblings got tested (negative) but then they had seen how suddenly I had gotten deathly ill. My father, with no obvious symptoms at all, was positive.

richard

MLO Newbie

Hello,

My Daughter was confirmed via endoscopy with celiac in March. I begged my brother to have his daughter tested because she also had the same symtoms. I BEGGED my brother. I BEGGED my brother. My Niece was also confirmed in May with Celiac. I have came to the conclusion that you can only do what you can do as my mom and dad refuse to be tested. I come from a big family and my sisters do not want to have anything to do with even the thought of having Celiac. So I have came to the conclusion that life is to short to worry about anybody else as their health depends on their own decisions.

MLO

Shamrock Newbie

My brother was diagnosed about 45 years ago and was told he would "outgrow" celiac back then. I was told many years ago that I would have to watch for it in myself and my children but so little was known back then it took 4 years and Child Protective Service investigating my mother as they thought she was not feeding him, before they found a doctor who made the Celiac connection. None of us siblings were tested then and after many years of wondering I have finally decided to be tested myself. I can say that what took so long was the thought of never eating bread or pizza again- I thought the face of celiac was my brother and I couldn't have what he had. I am overweight the pictures of him as a child looked like something from a third world country. A little knowledge I found after researching the Hashimoto's that I had made me realize that I most likely didn't have IBS or a very 'sensitive' stomach after all.

I have been gluten-free for a month now and feel great- unfortunately I will have to go back to be tested but no matter what I am sure I have found my answer. I haven't had a migraine, stomach ache, ect. in a few weeks now. I just wish my brother or my mother were alive to talk this over with, my father doesnt' remember it all but he and my husband really think I should be tested so that I will not be tempted to say well just this little bit won't hurt.

bonnie

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    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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