Newbie, Input Or Advice

[70SS396]

Hello All,

Like many I

[OptimisticMom42]

You could just go for the genetic testing. Your genes are your genes regardless of what you eat! And for your own peace of mind go off gluten for a few days and then have a peice of toast and ruin your day off of work! Sorry, I was kidding. Have a gluten free brownie, they're pretty good!

[70SS396]

Do most of you guys wake up with stomach pain/discomfort? Are you always aware of your stomach, in other words, it's always bothering you?

Any other thoughts?

[ang1e0251]

Yes, I used to always be aware of my stomach. There was pain, mild upset, and even burning. I had many more symptoms than that. But not gluten-free. Now my stomach feels normal. I thought I didn't remember what normal felt like!

If you're testing that soon, why don't you stay on the gluten for now? Make sure they take about 10 samples from different places in your small intestine. And do ask for the full panel of bloodwork. Just know that all of that can still show negative, either way, start the gluten-free right after your testing. You'll know whether it's helping or not. Some people know the first week, some after a couple of months.

[70SS396]

Yes, I used to always be aware of my stomach. There was pain, mild upset, and even burning. I had many more symptoms than that. But not gluten-free. Now my stomach feels normal. I thought I didn't remember what normal felt like!

If you're testing that soon, why don't you stay on the gluten for now? Make sure they take about 10 samples from different places in your small intestine. And do ask for the full panel of bloodwork. Just know that all of that can still show negative, either way, start the gluten-free right after your testing. You'll know whether it's helping or not. Some people know the first week, some after a couple of months.

Thanks for your reply! I actually started gluten-free diet Monday out of desperation (I've been in a 8 day flare up and had been essentially starving myself due to fear of eating). And today I am just starting to feel somewhat better and the pain/bloating has subsided somewhat, GERD is still there (take Prilosec). This GI thing is a total nightmare, debilitating at times, then has you (me) wondering if its in my head with so many negative test (when I know its not).

I'm very active with muscle cars, drag racing, flying, but when this flares up, all I want to do is lay down on my left side. Anyway, again thanks for your response.

[leadmeastray88]

I noticed that you didn't have a complete Celic panel done. These are the tests that should be included:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The ones I bolded were the only ones you had done, and they are less specific for Celiac than the tTG and EMA one.

I would suggest to keep eating gluten for a few weeks and to take this list to your doc and get it re-done. You may be surprised! Have you talked to your doc about a biopsy?

Alternatively, you could just stick to the diet (strictly) and see how you do! That is, if you don't want/need a clinical diagnosis to stick to it, and wonder to yourself "do I really need to be doing this?" Many people here (including myself) have been self-diagnosed and are comfortable with that decision. You can't go halfway with this, it's definitely a learning curve but could potentially be extremely beneficial for you!

Good luck

[Diva1]

Hello All,

Like many I

[GottaSki]

IF you are going ahead with the biopsy. My celiac doc at UCSD was insistant that I not go gluten-free until the procedure was complete -- it was frustrating to wait those extra weeks, but my biopsy (3 samples) did confirm celiac disease. He also wanted to make sure I didn't take any aspirin/ibuprofen(advil) for a couple weeks prior to the test.

I can tell you that I am pleased I waited and was confirmed.

What I can't tell you, but many others on this board can is... if you have already gone gluten-free and the gluten-free lifestyle has improved your health whether it is worth going back on gluten to possibly obtain an official diagnosis.

My teenage children have had a multitude of health concerns that could be celiac related, so with them we are going gluten-free first and if their health improves we'll have genetic testing done to confirm they have the genes.

Long way of saying -- it's your choice -- good luck to you!

[gfb1]

[snip]

My teenage children have had a multitude of health concerns that could be celiac related, so with them we are going gluten-free first and if their health improves we'll have genetic testing done to confirm they have the genes.

if your insurance will pay for the genetic testing and it will make you feel better... go ahead and do it.

however, if it will cost you out-of-pocket $$$, save your cash. you really won't get helpful diagnostic information.

the HLA-gene typing is not based on a causal relationship with celiac disease and will not provide additional information or risk components than those you already know (i.e., if you, or a primary relative have celiac disease...).

good luck!!

[70SS396]

Thanks everyone! I was wondering if my test were complete from reading here thought it wasn't (I'm totally new to this world). So I am happy you guys confirmed that for me. My IBS is off the charts and eating causes it every time, I have told my GI Dr this for 10 years. I am not even sure my main GI doctor has tested me for this. I kinda remember it might have come up a few years ago, and he said I would have lost a ton of weight. (the last few months I have lost 25lbs) The test I just got was done by a new GI Dr at Mercy Hospital (Baltimore) that came highly recommended. Now I wonder why he didn't do the complete test.

This latest (flare up) about two weeks now has had me in overdrive trying to find the cause of this nightmarish so-called IBS. Up all night, living off YoPlus and wheat crackers (until Monday).

As I mentioned, I can honestly say I am never unaware of my stomach, in fact just being aware is a good day (minor cramping bloating, etc... to full blown feeling like someone is literally cutting my bowels out as my face turns blood red and my lips tingle. And even after I go to the bathroom, I am still in pain (usually less) and just don't feel right. Never thought I would share this information on a forum, but I am at my wits end with this and need to find out why and FIX it. I am NOT buying this IBS thing one bit! Not with my severity and frequency, plus it is starting to wear me down mentally now. Other then this GI thing I am healthy (my heart is doing better).

I'm a very active person and hate constant GI issues. I guess I should load on the wheat for my test. This ought to be fun.

Thanks everyone for your input and advice, I really appreciate it!

[ang1e0251]

Some people call the IBS diagnosis "I Be Stumped".

[70SS396]

Some people call the IBS diagnosis "I Be Stumped".

Exactly! The catch all phase! As so many sit in pain, discomfort and embarrassment with "IBS".

Even after not eating very much in almost two weeks now, I am almost doubled over now with cramps at work. There has to be answer.

[70SS396]

Sorry for the long post - Interesting find. After a week of gluten-free food as best as I can tell, I did seem to feel better. Certainly the pain and bloating subsided (still was not regular regarding going to the bathroom). Plus I am eating very very little, so that is why I say

[70SS396]

I noticed that you didn't have a complete Celic panel done. These are the tests that should be included:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The ones I bolded were the only ones you had done, and they are less specific for Celiac than the tTG and EMA one.

I would suggest to keep eating gluten for a few weeks and to take this list to your doc and get it re-done. You may be surprised! Have you talked to your doc about a biopsy?

Alternatively, you could just stick to the diet (strictly) and see how you do! That is, if you don't want/need a clinical diagnosis to stick to it, and wonder to yourself "do I really need to be doing this?" Many people here (including myself) have been self-diagnosed and are comfortable with that decision. You can't go halfway with this, it's definitely a learning curve but could potentially be extremely beneficial for you!

Good luck

I have left a message with my new GI Dr and will discuss all these test you suggest. Thank you!!

[pdquick]

70SS396, what is this cardiomyopathy diagnosis? True cardiomyopathy requires its own work up and potentially genetic counseling and testing, as many cardiomyopathies have genetic causes. This is important for both you and your family members. In addition, if your cardiomyopathy is causing heart failure (meaning that your heart pumps less than adequately) it could be causing many of your symptoms. What does your doctor say about this?