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Sick And Suspicious

MartyrMom2

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MartyrMom2 Rookie
MartyrMom2
Posted

Hey everyone! I am glad to have stumbled onto this site! I really appreciate the wealth of information and the sense of community here. I am a newbie and have posted under a few different topics already. I hope to not repeat myself, but I wanted to share my personal history to see if any of you think my symptoms/diagnoses (please see my signature or other posts) warrant testing for Celiac Disease or not. I am a 34-year-old female, but my health started to deteriorate 7 years ago. In late Sept.'05, I developed what I thought at the time was a stomach virus. I had pretty intense abdominal pain that radiated to my back and diarrhea. I purchased some Imodium and went about my day. My symptoms lasted throughout the day, only to stop the next, and then return again. My symptoms continued so I consulted a gastroenterologist. In Jan. '06, I had an endoscopy and colonoscopy. I was diagnosed with IBS. I left the office with a pamphlet and a RX for Hyoscyamine. My abdominal pain and diarrhea continued for the next seven years (until present day). I finally discontinued the Hyoscyamine in Aug. '07 due to its ineffectiveness. I might as well have taken a placebo. I was diagnosed w/ hypothyroidism in Oct. '08 and put on Synthroid. While I am thankful to have had an astute physician recommend testing my thyroid (I know some women aren't as lucky), I am frustrated that I do not know the cause of my thyroid disease or my IBS. I am curious to know if it is Hashimoto's or not and furthermore whether gluten is the culprit. I have developed additional symptoms over the years, namely unidentified rashes, unexplained bruising, acid reflux, and lactose intolerance. I am slightly overweight and experience constipation as well, but my view is that w/ having an underactive thyroid, these symptoms don't negate Celiac Disease. My latest complaint is sciatica-type back pain. Let's just say my heating pad is my new best friend! What brought me to the suspicion of Celiac Disease or even gluten sensitivity again is that I picked up the latest issue of Woman's World magazine due to the headline grabber, "Sluggish Thyroid?" Inside it stated than an underactive thyroid might be due to an undiagnosed gluten or dairy sensitivity. I have two young daughters and I want to know if there's even the remote possibility that they have a chance to develop this disease. It wouldn't hurt to have some validation either. I know it seems like I've made up my mind, but after years of being treated like a neurotic nutcase, I suffer from self doubt. I would so appreciate any advice/suggestions any of you have to offer. Many thanks for taking the time to read my novel! :)

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shadowicewolf Proficient
shadowicewolf
Posted

It sounds like you might have it. Stay on gluten until all testing has been done, then go off it.

It is also genetic, there are two genes commonly found within 30% of the population that has been noted to be connected to celiac.

But, yes, with your issues, i would suggest going in and asking to have a full celiac panal done (which for the life of me i don't know off the top of my head) and then, should that turn out positive or inconclusive, go for the endoscopy. Regardless of its results, go try the diet.

I too had massive abdomen issues with my "D". It was random and got to the point where i'd have to take pepto bismol just to go out. Oh its just IBS the doctors said /sarcasm.

mushroom Proficient
mushroom
Posted

Here's the full celiac panel of tests. Do be persistent in getting them all -- many doctors will only do the tTG IgA.

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

Get the testing done sooner rather than later - your PCP can order it. The sooner you know the sooner you can start feeling better. Even if your results come back negative you should try going gluten free for at least 3-6 months. And do stay eating gluten until all testing is completed.

Let us know how it turns out. :)

MartyrMom2 Rookie
MartyrMom2
Posted
  • Author

Thank you, ladies or gentleman?! :unsure: I think I will pursue getting the full panel of blood work this week! Be blessed! :D

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    • Mari
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      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
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      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
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      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
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