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I Have So Many Questions!

susiek

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susiek Apprentice
susiek
Posted

I just learned my health history 2 years ago, when I located my birth family. There is a lot of lupus, rheumatoid arthritis, sclerodarma (my mother had lupus, scleroderma and a host of other illnesses; she died in 1972). My 3 sisters all have rheumatoid and two have lupus. My mothers identical twin sister has lupus.

My 4 brothers seem to have escaped all of these problems, but one has been diagnosed gluten intolerant.

Is gluten intolerance hereditary? If I was tested for rheumatoid/lupus etc recently, and all came back negative, does that mean I don't have celiac? Are they the same tests or different? When these tests were run, I was diagnosed anemia. My doctor blamed it on heavy menstrual bleeding.

I know these questions have probably been asked before, but I can't find anything using the search feature! Please forgive me for asking again!

I have been sick since the end of April. I had a stool test to check for e coli, salmonella, and parasites, all which came back negative. Symptoms are better, but I am nowhere back to "normal." The horrific cramping and pain seems to have passed, but the diarrhea is ever-present and the milder cramping.

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mamaw Community Regular
mamaw
Posted

Hello

I think you should do bloodwork for celiac sprue.I'm gluten intolerant but my daughter and one of her children are full-blown celiac and the other child is like me intolerant. Also you could do the Dna testing since it appears your not sure of your family history. I think even grandparents didn't tell what illness' they had so alot of info is lost on the medical history of many families.

I wouldn't stop until I got all the info from tests. I think alot of people have been dx'd incorrectly and not tested for this.And you must remember many never show outward symptoms so they don't know..... NOt everyone has reactions and then some get violent reactions when they sniff anything close to wheat or gluten.....

I was told not to worry but I couldn't get feeling better so I took myself off all wheat & gluten and it has helped my pain, rosacea, itchyness,sadness, hives & rashes. It was the best thing I ever did for myself.

mamaw

rinne Apprentice
rinne
Posted

I am new too and I think there can be a problem with getting a diagnosis. Have you been reading through the threads?

This is a great forum and I'm sorry not to be so helpful but I have to sleep, just ask more questions. I think you may have found a place where you will find some answers.

Welcome. :)

DingoGirl Enthusiast
DingoGirl
Posted

Hi susie, and welcome.

Yes, gluten intolerance can be hereditary, or developed over time, from what I understand. Celiac is a genetic auto-immune disease. All of the things you describe sound strongly Celiac-linked. I would suggest you keep researching Celiac, and read this board and digest as much as you can. There are so many brilliant people here, and we've all been through it, you'll find answers. Your symptoms sound very much like Celiac, and unfortunately, most doctors in this country don't know about it.

Have you removed gluten from your diet? If you do, and then get tested later, your tests will not read the same - i.e. they will not show the reaction to gluten if it's not in your body. I would try and find a doctor who knows about Celiac, a good gastroenterologist.

Keep reading and asking questions here - it takes a bit of time but you'll find the answers.

God bless - -

Supergirl Rookie
Supergirl
Posted

Hi there,

When I first started having problems, I was tested for Lupus, rheumatoid arthitis, Lyme disease, and many other things I don't even know the names of. They all came back negative. I mentioned to the rheumatologist that their was a family history of Celiac, and he said..."oh, we'll test for that too." The blood work came back positive for that. The Celiac blood test is different that all the others, so if you suspect it, see if your doctor will check it. I hope this helps.

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    • cristiana
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By cristiana · Posted

      Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this.   I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them.  Sometimes people just need a safe place to vent, and unfortunately having a go at one's parents is the all too easy option.  If she is anything like me, she will regret what she says one day.  (Oh... if only I had the chance rewind the clock!) I just wanted to add one more thing to Trent's and Scott's excellent posts and that is regarding diet:  I have to say, not one person  (my nutritionist, my gastroenterologist or GP) has EVER suggested that a poor diet was the cause of my coeliac disease.    In all the various clinics I have attended these past nearly 12 years no-one has ever asked if I was brought up on processed food, or questioned if I eat 5 fruit and veg a day.  Sure, unfortunately I am only too well aware that I could do a lot better with my diet and it's a constant challenge for me not to give into what I like (unfortunately I've always had a sweet tooth).   But I know some super healthy 10 fruit and veg a day types who still got coeliac disease, and equally, a lot of people who eat all the wrong stuff and they still have cast iron stomachs. Do encourage her to get checked though - it may be that she hasn't got coeliac disease at all. Come back to us if you need any more support through the process. Cristiana
    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

      Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject: Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet. Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?"  When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.
    • Scott Adams
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Scott Adams · Posted

      It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own. This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.      
    • Marie70
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Marie70 · Posted

      Hello, My mid twenties daughter is blaming my husband and I for her celiac disease.  She has not been diagnosed at all, but GOOGLE has informed her she has it.  She is going to go get tested now, but my question is, did we?  I was not the best cook while she was growing up and often made quick processed food for meals.  She is blaming us for what she ate growing up and is angry that we didn't feed her better.  I don't know how to react and all I could tell her was I was sorry.  Her older brother has Crohn's disease and he was diagnosed as a teenager.  She is also furious with us that we didn't change his diet either.  I don't know why I didn't and I am having so much guilt I don't even know how to handle this situation.  Both sides of our family have a history of IBS, Celiac and Crohn's disease.   I guess I just wanted to hear from anyone out there that can either point blame at me (I can accept it) or tell me that the food she ate growing up didn't have an affect on her.  I am thinking it most likely did. Thank you, Marie
    • RMJ
      High blood test numbers - with scales. Any advice?

      By RMJ · Posted

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