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Two New Family Members Diagnosed


Roda

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Roda Rising Star

I found out in July while at a family reunion that my father's full cousin's daughter (on my father's mother's side) is either celiac or gluten intolerent (no official testing). My mom told me yesterday that my father's great great nephew who is only 1 has to be gluten free. Mom told me he had the "rash". Sounds like DH to me. His mother is breast feeding and has to be gluten free for him. The baby's great grandfather (my dad's brother) has suffered from psorasis (? spelling) for years. I find it very interesting that two people, while distant cousins have issues. I am convinced this at the very least, comes from my father's side. Both my parents have been "screened" now and their doctor tells them they don't have it. I don't take much stock in what their doctor says, because when my mom asked what tests were run and what the actual results were he refused to tell her. He told her not to worry about it she did not have it. Mom I probably can buy this, but Dad is another story. He has been having issues with low phosphate. They found his vitamin d to be on the lower of normal side. He is taking vitamin D RX to get it up so he absorbs the phosphorus better. He was told his celiac tests were normal also (he just now got screened). Again I don't have much faith in his doctor, because if his numbers were borderline high(but technically in normal range) he is the type that would probably call it normal. Oh well maybe he isn't, and I just want everyone I love to be as healthy as can be. Now I just need to convince my brother to at least get screened. He has sarcoidosis and has a weird rash for years that does not go away. He also claims to be lactose intolerent. If I just had the extra money to get the genetic screening done. I am at least curious what genes I have. Someday maybe.


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    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
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