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Hello everyone!

I am 32 years old, and just recently discovered I likely am gluten sensitive. Luckily, my doctor suggested that I might be and to try a gluten free diet. So, at least she should be on board when I tell her what I found out about my reaction.

Some background on myself: I've had migraines for years. I am very easily startled. When I was a child I was in the hospital for respiratory infections. I have anxiety and am easily depressed. My Father has had polyps and his mother died of colon cancer. I swear my Mom has some sort of mental issue, she can get *very* angry in a second. She also has the early signs of arthritis.

A recent stressful situation at my job triggered "the big D". I had it nearly every day. Even after the stress was gone I was having cramps and D and gas after eating. I go scared since it wouldn't go away, so I went to the doctor, thinking I might have IBS. > She told me to try going gluten free. She didn't think I had Celiac (and I don't either) but did recommend me to try gluten free. She also gave me some anti-diarrhea medication.

Well, I was reluctant to try this out to be honest. And at first I didn't think I needed to, as I was OK after just one dose of the medication she gave me. I was OK for maybe 2 weeks, but then got sick again... Then my boyfriend mentioned low carb lifestyle, and I just decided to go ahead and do them both. Lower carbs and no gluten.

It is amazing how fast the "big D" went away! I also was no longer waking up anxious. About 2 weeks in, my Mom made some spaghetti, my favorite! I thought, well I can eat a little and be fine!... Yeah right! I was ill again the next morning, and the morning after woke up anxious again. >> This was my wake-up point. I am 99% sure this is what is wrong with me! I actually was happy to know it. Happy to find all the information and know that maybe this will help me more than with just digestion. It would be wonderful to be rid of at least some of my anxieties!

So, I have a follow-up appointment with my doctor on the 24th. I'm hoping I can talk her into getting me the genetic test. I also want my parents to get tested. I really think they could have it to.

I hope I didn't write too much. I just wanted to share what I have discovered so far!

I'll be here a lot I am sure!

~Christina

PS - I told my Mom I can't have regular pasta anymore, but she is willing to try the rice pasta and keep it just for me. <3

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Without testing, there is no way your doctor could determine whether you are celiac or gluten intolerant. It is a pity she didn't test you for celiac before suggesting you try the gluten free diet. Depending on how long you have not been eating gluten, it is probably too late to get a definitive answer.

I am certainly glad that eating gluten free has had such a dramatic effect on your symptoms. Yes, anxiety is a symptom that many celiacs suffer from and it does generally resolve when they go gluten free, although not necessarily immediately. One of the interesting aspects of eating gluten free for those who are gluten sensitive is that many symptoms that have been accepted as "normal" suddenly resolve, as if by magic. So that those who didn't think they had symptoms find out that, in fact, that did - they just did not recognize them :rolleyes:

The genetic test, as you may know, does not tell you if you have celiac; it can only tell you whether or not you are predisposed to develop it. If your parents have the same predisposing genes as you, it could point to celiac. The better test for your parents would be to have the celiac testing done since you inherited the gene(s) from one or the other (or both).

Stay gluten free and stay well, and post as long and often as you like - there is always someone here who will read and try to help with any questions. Also, read as much as you can about how to keep gluten out of your life. :)

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Without testing, there is no way your doctor could determine whether you are celiac or gluten intolerant. It is a pity she didn't test you for celiac before suggesting you try the gluten free diet. Depending on how long you have not been eating gluten, it is probably too late to get a definitive answer.

...

The genetic test, as you may know, does not tell you if you have celiac; it can only tell you whether or not you are predisposed to develop it. If your parents have the same predisposing genes as you, it could point to celiac. The better test for your parents would be to have the celiac testing done since you inherited the gene(s) from one or the other (or both).

Stay gluten free and stay well, and post as long and often as you like - there is always someone here who will read and try to help with any questions. Also, read as much as you can about how to keep gluten out of your life. :)

Oh, it is a shame about the testing. As I will not be willing to eat gluten again willingly and make myself sick just for a test.

But maybe I can suggest my parents get tested since they are still eating 'normally'.

Thank you so much for the kind reply! I know that this isn't going to be easy and I know it will take time for my body to heal. I just have high hopes, since so much of what I read relates to me perfectly!

Today I am lethargic, but still feeling better on the inside. I'm trying to stay positive. ;)

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Hello.

I am new here as well.

I have had GI symptoms that come and go, and various doctors through the years have suggested food preservative allergies, lactose intolerance, and stress reaction. When I am fine...I am fine. But when my GI symptoms (diarrhea, gas, bloating, cramping, pain under the ribs, nausea) my life is a living hell.

However, as many of you may well know, there is an attitude with doctors that unless they can diagnosis "it", "it" does not exist.

Since doctors have not been able to help me, I have done my own research and I suspect a malabsorption problem, and I wonder if Celiac Disease is the ultimate cause.

I am going to a naturopathic doctor in a couple of weeks (at this point I have nothing left to loose going to alternative medicine). My question is this: have any of you had moments of a few months of feeling well, then, BOOM, 2 -4 weeks of GI distress that makes you just want to stay home near your bathroom?

Thank you.

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Welcome to the site Wysterya and LMB,

@LMB, yes that is something happened to me at time, being better and then worse.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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Thank you for the tips and all the links!

Unfortunately it is too late for me to get the test. I am going gluten-free already. The Doctor just suggested it and didn't mention a test. :/ But, I will be seeing her again on the 24th and I will see what she says. Though, I am not willing to become ill again just for a test. :P

I'm definitely cooking more! Plan to dig out the old crock pot and use it! If I can make enough for leftovers it will help. I got used to just cooking for myself, so leftovers were not common here. I'll get there though. I am just thankful it doesn't seem to be anything I can't handle. Not easy, no. But I am trying to not allow it to get me down and just focus on healing and feeling better!

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That's fine to not get tested. If you can stick to the diet without a formal diagnosis there is no need for the test. It's not like the tests get us any better treatment. I hope you feel better soon. :)

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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