What Ails Me?

[solitaire-master]

I've been perusing these forums for quite some time now and finally mustered up the courage to post. I'm just wondering if you guys think this would sound like celiac's disease or potentially something else.

 

Symptoms that I think are all possibly connected together started about 8 years ago with a random onset of Dermatographic urticaria (skin writing). It came for about 2 years and then suddenly stopped (i'm apart of the lucky 5% where it goes away). About the same time period when the DU stopped, I started having messy BM's which were pretty bad for about 4 years, and somehow I have managed to improve that over the years by eating more healthy in general, but it still remains today. Then about 3 years ago Post nasal drip started one day and never went away. It's extremely annoying and I believe it's my body telling me something is wrong. Due to stress and PND my throat gets very tight sometimes and even my voice gets higher because of it. It becomes very cumbersome to speak. I am a 25 year old male, and I also suffer from hair loss and acne that is always on the verge of breaking out even though I take really good care of my face. My doctor diagnosed me with ADHD. I have brainfog that is difficult to overcome, and a lethargic way of thinking. For example, when it comes to checking my to do list, even the easiest things get put off.

 

I've had a colonoscopy about 3 years ago looking for any kind of damage, but none was found. They did not perform an endoscopy. 

 

I've been gluten free for 3 days. I do not know if it is a placebo effect or not, but I feel a little bit healthier and think a little bit clearer. It has been easier for me to communicate with other people. I have social anxiety, but that has subsided a liiittle bit. The post nasal drip is still there, but it feels like it miiiiiight have thinned about a liiiiittle by a fraction, or at least changed somehow. I still have to swallow just as much though. 

 

I was hoping the post nasal drip would go away within a few days. Does anyone have experience with this? How long did it take for yours to go away? And if this isn't Celiacs, what do you think it could be? I know we are not doctors on this forum, but I am hoping your personal experience can help me out. Any help is much appreciated.

 

Sincerely,

-Distressed Forum Poster

 

 

[solitaire-master]

Hey guys, just a little update. I've noticed my skin is clearing up and has more color. Another interesting observation is that the vitamins I have been taking started making me feel queasy. They are really expensive vitamins and I'm supposed to take 14 a day. I usually can take up to 5 at once without feeling queasy, but I only took 3 earlier today and felt queasy. Is it too early for absorption rates to be affected? because these vitamins have never made me feel nauseous and I've been taking them for months. Today is the 4th day and I still have PND. 

 

Gluten free food by the way is actually delicious! Every meal is homemade because anything out of a box and most things out of a can have some kind of gluten. I thought I would lose weight, but I can see myself gaining a few pounds from this experiment .

[solitaire-master]

I was hoping somebody would be willing to help me out. I've decided to stop going gluten free until properly tested for celiac disease. I found that after going gluten free I couldn't eat dairy without having serious bouts of gas. I don't really know why that happens when it didn't before. I used to be able to eat ice cream just fine. After eating good old lasagna and toast I noticed that my nose was runny, I was sneezing again, and my nostrils had become inflamed and am now breathing through my mouth. 

 

I've ordered the biocard home kit test. I'm going to see how this turns out and if it is positive I will bring it to the doctors to provide reason for a blood panel and endoscopy. I'm in the military though and I've run up the medical bills throughout my career trying to pinpoint my problems without any success. So I want to have good reason to ask for more tests. If I am found to have celiacs disease my career will be dramatically altered. Even with all of these signs and symptoms I still believe my tests will show up negative for some reason, but I'm hoping for positive. If not I at least know that I am lactose intolerant.

[jhol]

hi there,

 

 sorry your posts seems to have been missed by people,

if you think celiac is your problem you have done the right thing by going back on gluten to try and get some results. and a lot of celiacs/ gluten intolerants do have a problem with dairy at least until your intestines start to heal. you may find you also start to react to other foods as well- like soy and corn.

im in the uk and all my tests came back negative so im on the diet to see if i can solve a few of my symptoms.

there are many on here who have not been diagnosed as celiac. im not that knowledgeable so prob cant answer your questions but im sure others will answer when they see your posts.

hope you find some answers and your return to gluten deosnt cause to many problems ( some people just cant handle it)

its usually a good idea to start a food journal and keep a note on everything youve eaten and if you have any symptoms- this can usually pinpoint any more unusual intolerences or delayed reactions

good luck 

[1desperateladysaved]

Hi Distressed,

 

Your body sure does seem to be telling you something is wrong.  I had fogginess and fatigue that did seem to be changed by gluten free and other things I did.

 

Suppliments have been really helpful for me.  One does have to spend some money to get quality ones.  Do make sure that no form of wheat, barley, or gluten is in them.  My supplements do usually cause some discomfort about a week after I begin them.  I say any reaction is a good reaction.  I usually have a week of feeling great before the hard stuff helps.

 

Sorry, you have been struggling health wise.  I can relate to spending money, time, and effert on it with little approval of others.  I sure hope your bio-card will be definitive for you.  If you find there is no way for you to be tested, you can trial by going gluten free.  That is usually the final test anyway.

 

Diana

[MissyShelle]

I'm right there with you and also in the process of getting answers. One thing that will (sadly) help me get testing done without a fight is my long history of colon problems. MY GI specialist even asked a few years back if I had specific symptoms related to Celiac. At that time, I was not. 

 

I also take vitamins but made sure to check that they were gluten free. Luckily, they were so as far as I can tell, except for a small amount of nausea,no reactions. 

 

I hope you get some answers soon! 

[GFinDC]

Hi SM,

 

Sorry, things can be slow to get responses on the weekends.  I think you are wise to go ahead and get the testing done for celiac disease.  Staying on gluten until testing is done is very important.  If you do have celiac it is helpful to know for sure.  Your symptoms could definitely point towards celiac disease.  Many celiacs have to give up dairy for a while but can start eating it again later after they have been gluten-free for some time.  Dairy by itself is a possible cause of sinus issues for many people also.  I don't know why that is but it seems to be a cause of congestion.

 

The Biocard test is fine, but it only tests one antibody and it is possible for other antibodies to be active even if one is not.  So don't assume you are not celiac if Biocard is negative.

 

There is a recently identified gluten/wheat condition that they don't have any test for also.  This article talks about it some.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

 

Here's some more reading that might be helpful:

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

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[solitaire-master]

  On 3/11/2013 at 10:50 AM, jhol said:

hi there,

 

 sorry your posts seems to have been missed by people,

if you think celiac is your problem you have done the right thing by going back on gluten to try and get some results. and a lot of celiacs/ gluten intolerants do have a problem with dairy at least until your intestines start to heal. you may find you also start to react to other foods as well- like soy and corn.

im in the uk and all my tests came back negative so im on the diet to see if i can solve a few of my symptoms.

there are many on here who have not been diagnosed as celiac. im not that knowledgeable so prob cant answer your questions but im sure others will answer when they see your posts.

hope you find some answers and your return to gluten deosnt cause to many problems ( some people just cant handle it)

its usually a good idea to start a food journal and keep a note on everything youve eaten and if you have any symptoms- this can usually pinpoint any more unusual intolerences or delayed reactions

good luck 

Thanks, the lactose intolerance really came on strong. And not only that, I feel sick and tired now when I eat. I'm not sure if it's because of dairy or wheat right now. Through this experience I've been able to recognize symptoms that I hadn't before directly after meals. For example, subtle symptoms like a slight pinching pain in my stomach, headaches, runny nose, nausea (like i smoked one too many cigarettes or had one too many beers), brain fog, and inflamed nostrils. Those are just the immediate reactions that I've noticed. The brain fog is very difficult to know if it's there or not, but I have a feeling it is with the way I feel. This could be either caused by lactose or gluten, I'm not sure which is the culprit. But either way, it is suspicious that dairy did not bother me before this gluten free experiment. I suppose that could be a sign of an underlying condition causing the lactose intolerance. 

 

I wish you good luck in your efforts. Negative test results, but ongoing symptoms is very frustrating. We all just want something to blame for the way we feel so that we can better ourselves and just simply move on. Chances are your symptoms will clear up and you wont need a doctor to tell you that!

 

In my efforts to figure out what is wrong with me I have really started to feel like a hypochondriac. I'm a 25 year old male. I shouldn't have these problems! Especially being in the military, an extensive medical record but nothing conceivably wrong with me looks suspicious. 

[solitaire-master]

  On 3/11/2013 at 9:52 PM, GFinDC said:

Hi SM,

 

Sorry, things can be slow to get responses on the weekends.  I think you are wise to go ahead and get the testing done for celiac disease.  Staying on gluten until testing is done is very important.  If you do have celiac it is helpful to know for sure.  Your symptoms could definitely point towards celiac disease.  Many celiacs have to give up dairy for a while but can start eating it again later after they have been gluten-free for some time.  Dairy by itself is a possible cause of sinus issues for many people also.  I don't know why that is but it seems to be a cause of congestion.

 

The Biocard test is fine, but it only tests one antibody and it is possible for other antibodies to be active even if one is not.  So don't assume you are not celiac if Biocard is negative.

 

There is a recently identified gluten/wheat condition that they don't have any test for also.  This article talks about it some.

 

Non-celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

 

Here's some more reading that might be helpful:

FAQ Celiac com

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

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

 

That's alright, I only just came back to the idea that my problems can be caused by celiacs disease because my sister said she doesn't eat gluten because it makes her feel sick. I tried going gluten free before and reading up and researching on here, but I don't think I did the diet properly. I cancelled my amazon order for the biocard test and ordered it right off their website. It's cheaper on their website (glutenpro.com), and they actually have a genetic test for celiacs disease now. Plus on amazon the store said it would arrive sometime in APRIL. No thanks!

 

I wonder why it is that dairy suddenly bothers people when they go gluten free?

 

Thanks for the response, I really appreciate it.

 

Distressed

 

  On 3/11/2013 at 12:48 PM, 1desperateladysaved said:

Hi Distressed,

 

Your body sure does seem to be telling you something is wrong.  I had fogginess and fatigue that did seem to be changed by gluten free and other things I did.

 

Suppliments have been really helpful for me.  One does have to spend some money to get quality ones.  Do make sure that no form of wheat, barley, or gluten is in them.  My supplements do usually cause some discomfort about a week after I begin them.  I say any reaction is a good reaction.  I usually have a week of feeling great before the hard stuff helps.

 

Sorry, you have been struggling health wise.  I can relate to spending money, time, and effert on it with little approval of others.  I sure hope your bio-card will be definitive for you.  If you find there is no way for you to be tested, you can trial by going gluten free.  That is usually the final test anyway.

 

Diana

 

Diana,

 

What kind of supplements helped you? Your statement about money, time, effort, and approval is unfortunately very true. Even if the biocards are false I will be going in to the doctors office for more testing, but without the ammo.

 

Distressed

 

  On 3/11/2013 at 3:38 PM, MissyShelle said:

I'm right there with you and also in the process of getting answers. One thing that will (sadly) help me get testing done without a fight is my long history of colon problems. MY GI specialist even asked a few years back if I had specific symptoms related to Celiac. At that time, I was not. 

 

I also take vitamins but made sure to check that they were gluten free. Luckily, they were so as far as I can tell, except for a small amount of nausea,no reactions. 

 

I hope you get some answers soon! 

 

I'm sorry to hear about your colon problems. I will certainly be keeping tabs on you to see how you do in the future. I wish you luck in your diagnosing process.

 

Distressed