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Jen85

Is Celiac A Possibilty?

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I am 26 years old and i have had stomach problems for as long as i can remember. I remember as a child my mom taking me to the doctors at first i was taken off of dairy products, then all fried foods. Then we were told i had IBS. Then my parents were told it must be because of stress and was then taken to a counselor. After all of these failed attempts we just quit going to the doctors and for a most of my teenage years it seemed to go away. Maybe not completely but i didn't complain of a stomach ache every day. Now my mom started having horrible stomach issues and at that point she was sick of not getting any answers for her self so she settled on a very strict diet of meat and vegtables only and still does til this day because it made all her problems go away. After my first child i started having the stomach issues again. Sick after every meal. diahrrea for weeks straight, horrible abdominal pains. I began to get depressed because I didn't want to go out with my friends because i was scared I was going to have to go to the bathroom. I started gaining weight like crazy and to be honest I havent stopped i am 5'2 and weigh 197lbs. Not healthy. I learned to just deal with my problems for years. It wasn't until one day about 6 months ago i heard someone talking about a gluten intolerence on the radio and everything this person said was how i felt so i began avoiding gluten. I felt way better and the rashes on my elbows that i had for years started clearing up. After a few months I fell off the wagon. I love food. I love pasta and pizza and bread I couldn't avoid it any longer. For the first few weeks I still felt ok so i thought maybe I was wrong in avoiding it. Then all of a sudden it hit like a ton of bricks I was sick again and this time not only did I have stomach problems but My joints started aching and popping constantly, i started getting bad headaches. I just thought OK here we go again and i became very unhappy. Well about a month ago i noticed that my now 7 year old daughter started getting itchy rashes on her body and she has been starting to complain about her stomach after every meal. I went last week to finally talk to a doctor. I don't want my daughter to go thru what I went thru. My doctor did blood work on me and brought up the possibility of celiac disease. I go tomorrow to get the results. I do not know a lot about this disease because to be quite honest i never even heard of it until my doctor brought it up last week. I was just curious if anyone has had a similar expereince? Here is a list of my symptoms- Diahrrea, abdominal pains, extreme fatigue, hair loss, itchy skin rashes on my elbow, alot of pain and popping in my joints, weak nails, depression, migranes...and words of wisdom or advice would help. Like i said I am 26 years old and somtimes when I get out of bed i feel like I'm 80. Thank you for taking the time to read this =)

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Hi and welcome! Firstly, I would like to say that everyone has different symptoms with celiac disease and I'm sure others on here will give their account of how it made them feel. As a fellow sufferer, I would say that a lot of your symptoms do sound very familiar and there is a high chance that you have Celiacs disease. Don't rely on blood tests alone though, as you can get a lot of false negatives. I had a false negative with blood tests and it wasn't until I had a biopsy (you must be including wheat/gluten in your diet for at least 6 weeks for this to show up) that I was diagnosed with celiac disease. What also sounds very familiar is the fact your mother and daughter have also had similar symptoms to yourself, and celiac disease can run in families. Obviously, it's your choice whether you go down the route of biopsy, for you or your daughter. My hair fell out and had severe problems with my muscles and was severely anaemic which turned out to be because I wasn't absorbing nutrients from my food (which is also a symptom). Could you get your levels checked to see if you are deficient in vital nutrients (e.g. Iron etc.)?

I hope this helps.

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Thank you so much for your response. I didn't know it could be so difficult to be diagnosed. I thought I would go in tomorrow and they would tell me yes or no and that would be the end of it. THat's really what I was hoping for anyways. Depending on my results I will probably have my daughter tested as well. I talked to my mom about it but there is no was I can ask her to put herself back through eating wheat/gluten after so many years of avoiding it. She has also been diagnosed with epilepy and I wouldn't expect her to put that kind of stress on herself. I just want to get this handled I am getting married in 7 months and although i am very happy I have no energy to plan a wedding. Along with my soon to be husband I will also have new step- children and I would do anything to just have the energy and feel normal lol. I am keeping my fingers crossed and hoping i get some answers tomorrow

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Sure sounds like Celiac to me! Your most telling point is that you went gluten free for a while, and you felt better, then you ate gluten again, and you felt worse. That's very straightforward.

As to the pizza/pasta/ bread issue, you CAN eat those things gluten free. It takes more work to make those things tasty when they're gluten free, but it's possible, and will keep you from falling off the wagon.

Good for you wanting to make sure your daughter is healthy!

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Yes, since celiac is genetically based, it sounds like it might have struck all three generations. The neurological symptoms of gluten can also mimic epilepsy, although it generally does not respond well to epileptic medications, as in the case of my brother.

I would pretty much bet your tests are positive, and if they are not I would ask for a biopsy.

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Sure sounds like Celiac to me! Your most telling point is that you went gluten free for a while, and you felt better, then you ate gluten again, and you felt worse. That's very straightforward.

As to the pizza/pasta/ bread issue, you CAN eat those things gluten free. It takes more work to make those things tasty when they're gluten free, but it's possible, and will keep you from falling off the wagon.

Good for you wanting to make sure your daughter is healthy!

[/quot

I have lots to learn if this is what I have. I really just don't want my daughter to suffer or be embarrassed of how she feels like I did.

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Yes, since celiac is genetically based, it sounds like it might have struck all three generations. The neurological symptoms of gluten can also mimic epilepsy, although it generally does not respond well to epileptic medications, as in the case of my brother.

I would pretty much bet your tests are positive, and if they are not I would ask for a biopsy.

Wow I did not know that about epilepsy mimicing celiac. Although my mom does seem to be doing good with her medication...but on the other hand my brother who also has been diagnosed with epilepy is having a problem finding the right kind of medication. None seem to be working for him. Thank you for your advice. I will ask for the biopsy if the blood work comes back negative.

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This may be an odd question....but does forgetfulness/memory loss have anything to do with Celiac? My memory has gotten so horrible that even my 7 year old daughter has noticed it and sometimes comments/teases about how mom doesn't remember anything. Just curious? Or maybe thats a completely different issues lol

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This may be an odd question....but does forgetfulness/memory loss have anything to do with Celiac? My memory has gotten so horrible that even my 7 year old daughter has noticed it and sometimes comments/teases about how mom doesn't remember anything. Just curious? Or maybe thats a completely different issues lol

The answer is yes -- it is commonly referred to on this board as "brain fog". :)

And it is not epilepsy mimicking celiac, but celiac giving symptoms that are like seizures in those for whom gluten affects the neurological systems.

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Thank you so much for your response. I didn't know it could be so difficult to be diagnosed. I thought I would go in tomorrow and they would tell me yes or no and that would be the end of it. THat's really what I was hoping for anyways. Depending on my results I will probably have my daughter tested as well. I talked to my mom about it but there is no was I can ask her to put herself back through eating wheat/gluten after so many years of avoiding it. She has also been diagnosed with epilepy and I wouldn't expect her to put that kind of stress on herself. I just want to get this handled I am getting married in 7 months and although i am very happy I have no energy to plan a wedding. Along with my soon to be husband I will also have new step- children and I would do anything to just have the energy and feel normal lol. I am keeping my fingers crossed and hoping i get some answers tomorrow

Good luck with your test results. I fully understand you not wanting to put your mother or daughter through eating gluten again, I think that's a wise decision. It confirmed it to me, that your mom has Celiacs with her having epilepsy as well. None of you have to justify it to others by having tests and biopsies, if you feel better without gluten, that's a good enough reason to stop eating it. Let us know how you get on with your results.

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Well I am back from the doctors and tested positive for Celiac. Suprise Suprise!!!!!!!!!!! Now i just feel over whelmed but atleast i know what it is.

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Do not feel overwhelmed, and do not feel as if you have to address the whole thing all at once. Bite it off in little (gluten free :D ) pieces. Discuss it with your family first, and see if your spouse will agree to take the house gluten free which will make it a lot easier for you (and your daughter). Oh, and have your daughter tested too. If they will do this then you can clean your pantry and throw out/give away everything with gluten. Your husband can still eat gluten outside the house as long as he brushes his teeth before he kisses you!!! Doing these things will prevent your being cross-contaminated with stray gluten crumbs, and you will find after being gluten free for a while that it does not take much to set you off.

Next thing is to read Newbie 101 -- I will not repeat everything in there. Then come back and ask us all the questions you want / need to.

Congratulations on getting a diagnosis and solving the family medical mystery. Does your doc want to do a biopsy and have you decided if you will have one?

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He didn't even mention a biopsy? Should i ask about one?

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Well I am back from the doctors and tested positive for Celiac. Suprise Suprise!!!!!!!!!!! Now i just feel over whelmed but atleast i know what it is.

At least you know for certain now, which is a very good place to start. It can be a little over-whelming to begin with, but it will get better with time. It's surprising that once you have a diagnosis everything else just fits into place. There's always lots of help on this forum too.

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No, most of us feel that the blood test is a sufficient diagnosis. Some old school docs will not give an official diagnosis without the biopsy, however.

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Biopsy is the only way to be absolutely sure, but if the blood test was positive, and with all your symptoms, your doctor should be kind enough to diagnose you as Celiac. If you really want to know for sure, you can schedule a biopsy and start eating gluten free after it's done.

But, with all you've been through all ready, I'd say don't bother unless your doctor insists (which he didn't). it's better than you start feeling better and healing sooner rather than later.

Definitely get your daughter tested. If she has it, then your mother likely does too. (My mom, me, and my sister all have it, as well as aunts and uncles on BOTH sides of my family). You should also recommend that your siblings, if you have any, get tested too.

With any luck, you'll be feeling much better by the time your wedding comes around (Congratulations), and if your daughter can start gluten-free now, she should heal up quite quickly and have a healthy life.

Good luck!

Peg

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Hi Jen,

Celiac can cause nuerolgical damage resulting in what is called gluten ataxia. Gluten ataxia is when the antibodies attack parts of the brain and can cause trouble walking etc. Some people develop leg muscle spasms etc from the nerve damage. Celiac also can cause what are called UBO's (unidentified bright spots) on an MRI of the brain. Your brother and mom may have those, just a guess. The possible list of symptoms for celiac is about 300, and covers every part of the body. The nuerolgical symptoms of celiac seem to take longer to resolve than the GI symptoms. Otherwise it is a lot of fun tho. :)

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    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
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    • Becca4130, Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten. NCGS is a real thing even though most doctors don't recognize it today. See this care2 article that explains what might be  happening in your case. https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease. see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public. quoting Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals." Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy. and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work. See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long. quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." ****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet. You might also see this thread that talks about some of these same issues. I hope this is helpful and good luck on your continued journey. I also meant to add this link http://www.mdmag.com/medical-news/not-everyone-predisposed-to-celiac-disease-develops-it Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it. quoting "The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

      "So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)" Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
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