New Here, Some Questions!

[Wthrman13]

Hello everyone,

I'm brand new to the board, and don't know (yet) if I have Celiac Disease. However, my brother was just diagnosed with it, and I decided to do some research on the disease, since I was told that it was genetic in nature, and I have had (for some years now, and possibly even longer) some of the same symptoms.

Here is a little bit about me and some of my symptoms. I have always been something of a skinny guy, but otherwise I've always felt like I was a pretty healthy individual. However, for as long as I can remember, I have had various gastrointestinal problems, ranging from intermittent diarrhea, cramps, gas pains, and upset stomach, usually at least once or twice a week, and often a lot more frequently. Up till now, I had always thought that this was more or less normal, since they don't occur after every meal. I just thought that was how I was. Regarding the gas pain, in the last year or so, I've noticed an increasing tendency to "build up" a lot of gas during the night, to the point where the pain (usually not too excruciating though, but enough to be annoying) often wakes me up. Once I get up and start moving around, getting ready for my day, the pain (and gas!) usually goes away pretty quickly, only to return the next morning.

Other symptoms include fatigue, apathy, and difficulty concentrating at times. This has been rather annoying more than anything for me in the last few years, since I'm a graduate student working toward my Ph.D.. At times I just find it difficult to sustain concentration on my research and work, and often prop myself up with caffeine, although I'm hardly atypical in this regard, as a graduate student. Again, though, this doesn't happen all the time. Some days I feel just fine and am able to get a lot of work done. I'm something of a night person, and often find that I am most awake and able to concentrate at night, and it's usually only during the daylight hours that I experience these symptoms of fatigue. Up to now, I just always felt that that was "how I was", and chalked it up to not eating right (I admit my diet consists of more than my fair share of fast food, snacks, caffeine, etc.) and not getting enough exercise.

So, my main question is, does this account gel with anyone else's symptoms that do indeed have Celiac Disease? MY research up to this point on this disease tells me that the symptoms can differ widely between individuals.

Also, first thing tomorrow, I'm going to set up an appointment with the doctor to get tested for this. I've never done anything like this before. I'm just planning on asking for a physical while I'm at it, and to tell them that my brother has been diagnosed, and that I would like also to be tested. I'm hoping that they think that is enough justification to test me, along with my list of symptoms.

Thanks a lot for any feedback, and here's to hoping that I don't actually have this (although it would seem to explain a lot if I did)!

[tom]

So, my main question is, does this account gel with anyone else's symptoms that do indeed have Celiac Disease?

Absolutely.

For years I too figured that's 'just the way it was'.

I wish I'd wised up much sooner. Celiac wasn't talked about much in the 80s & 90s.

Once a sibling is diagnosed, the chances of another having celiac disease are much higher. The doc HAS to test for it, or is simply a doc not worth seeing again.

Thanks a lot for any feedback, and here's to hoping that I don't actually have this.

Really? You'd rather have an unknown something causing worsening symptoms?

I 100% believe you're better off if you DO have it, because then a simple (daunting at first, but in the end simple) diet change will make you feel better than you've felt in many years!!

[Wthrman13]

Thanks a lot for the reply! Yes, I suppose you are right about wanting to be diagnosed with this after all. I would rather know what it is that is affecting me, and part of me is hoping that is indeed what I have, and not something more serious. I guess what I meant was I hope that I do not have any sort of disease, and that this incident would "scare" me into changing my diet for the better, regardless, if that makes any sense .

Another thing I forgot to mention. I do have another symptom, but I'm not sure that it is related. A lot of times (and this has also been going on for years), I have real difficulty swallowing food. If I'm not very vigilant about chewing my food, particularly tough meat, the food often gets backed up in my esophagus, to the point where it becomes very painful, and sometimes I end up having to expel the caught food. I did some sleuthing on this some time ago, and found various references to this condition as "steakhouse syndrome" (and indeed, it has happened to me on more than one occasion in a steakhouse!), and could be caused by a constriction in the esophagus. If/when it happens, it always happens while I am eating, never after a period of digestion, which makes me think that is definitely something above the stomach. Again, I have absolutely no idea if these two things could be related, but it is something else I'm going to mention to my doctor.

[tom]

I guess what I meant was I hope that I do not have any sort of disease, and that this incident would "scare" me into changing my diet for the better, regardless, if that makes any sense .

It does

Another thing I forgot to mention. I do have another symptom, but I'm not sure that it is related. A lot of times (and this has also been going on for years), I have real difficulty swallowing food.

I was asked that by a GI, an alleged celiac 'expert'. Not sure whether he asked to rule in or out celiac tho.

Definitely mention it.

And Good Luck w/ whatever may come.

(Studying metoerology?)

[Wthrman13]

It does

I was asked that by a GI, an alleged celiac 'expert'. Not sure whether he asked to rule in or out celiac tho.

Definitely mention it.

And Good Luck w/ whatever may come.

(Studying metoerology?)

Yes, indeed studying meteorology (not for a TV job though! ), and thanks!

[hathor]

It definitely could be celiac. You are wise to get tested. Bear in mind, though, that there are a substantial number of false negatives. There are also people who are just as sensitive to gluten, but it doesn't take the form of villi damage, or the villi haven't been damaged ... yet.

So, if there is a negative test, I think it would be still be worthwhile to do a dietary test, i.e., go off gluten and see how you feel. You also could do Enterolab testing, which is more sensitive.

But I guess there is no reason to jump the gun and think about the consequences of a negative test before you have been tested

Your choking symptom intrigues me. I would be interested in hearing what your doctor says. I have had something similar, even though I am vegetarian (no chunks of steak). What used to happen to me was a pain in my esophagus, when it felt like the food was stuck and didn't want to move. It felt like a spasm or constriction of some kind. I had this most often when I was eating bagels; I always had to eat them very carefully, and even then, I would sometimes get this reaction. I haven't noticed it since I went gluten-free, so it might be an allergic sort of response. I sometimes would get sneezing fits after meals as well.

[nora-n]

The esophagus, here is a blog entry about eosiphilic esophagus.

Open Original Shared Link

There are sometimes postings about symptoms like that on the celiac forums.

I have something like that too and I am trying to get it looked at.

nora

[gfgypsyqueen]

Just because of your brother being a Celiac is enough of a reason for you to be tested. You should look into the gene test too. Keep in mind, do not stop eating gluten if you plan on getting a biopsy diagnosis. Continue eating normally until the bloodwork and the biopsy tests are completed.

How is your brother doing on the diet? A lot of people going through a mourning period of sorts when they get the diagnosis, so try to help out if you can. Many restaurants post gluten-free menus and some have gluten-free beer

Post the results from you Dr visit. (BTW, some Drs are amazingly un-educated about celiacs and will tell you that you cannot have Celiacs for a variety of weird reasons. Just insist on the blood work or referral to a gastro.)

[Canadian Karen]

The esophagus, here is a blog entry about eosiphilic esophagus.

Open Original Shared Link

There are sometimes postings about symptoms like that on the celiac forums.

I have something like that too and I am trying to get it looked at.

nora

I have been told I have Barrett's esophagus, where there is inflammation all around the opening. I don't know if it is related to celiac though.

[Wthrman13]

Thanks to everyone for the feedback. I have set up an appointment with the doctor for Wednesday, so the ball is rolling. I will certainly update everyone once I know more.

[gfpaperdoll]

A lot of us have had or have a little swallowing problem now & then. Mine is mostly gone now after I have been gluten & dairy free for 3 1/2 years...

[Wthrman13]

Hello folks, just an update here. I finally got the blood tests back (although I don't have a copy myself; I'm going to go in and request one today). The doctor said that some of my antibodies from the panel were elevated, but that one was more inconclusive. I'm assuming he means that 2/3 were positive and the other inconclusive. He didn't tell me which ones, which I know is important. I was half asleep when he called me this morning, so I'm not sure I heard him completely correctly on that score. He did call it a "wheat allergy", which it isn't, so this leads me to believe that he's not overly familiar with the disease. Anyway, he wants to refer me to a GI (GE?) ASAP to get this clarified, so I'll probably be talking with them early next week at the latest. At any rate, I'm going to go in to the doctor's office and get a copy of the blood tests myself.

By the way, he ran a slew of other blood tests, and all of them were clear (liver function, thyroid function, etc.), and I wasn't anemic (he said I was right in the middle for that one).

[Darn210]

Wthrman,

Just wanted to tell you about my husband's swallowing issue. It sounds exactly what you described. It was almost always meat. It would stick in his esophagus and not allow anything else to pass. It was never an issue of choking. He would have to lay down until the food either passed or came back up. At one point, after a couple of hours, it had not cleared and he went to the emergency room. Shortly after he got there, it cleared itself. He could always feel/tell when it did. Of course the trip to the ER finally made him realize he needed to see a GI. He was scoped and they found scar tissue around his esophagus where it attaches to the stomach. During the scope, they stretched the scar tissue/esophagus to widen the entry to the stomach back to where it should be. His diagnosis was acid reflux. He rarely had heart burn and they said it was because he'd had it for so long that the scar tissue was blocking the acid from getting up into the esophogus but in turn, the amount of scar tissue was continuing to build. Immediately after, he could really feel the heart burn and is now on acid reflux meds.

Eight years later, as we were persuing an answer to my daughter's issues, her GI thought that she had eosinophilic esophagitis, especially when he found out about my husbands GI history. He thought that my husband might have EE also. My daughter was scoped looking for EE, but her GI biopsied esophagus, stomach and intestine (since he was already there so to speak). Blood tests and a muddied biopsy result led to a diagnosis of Celiac which was a surprise for everyone.

If your GI wants to do a scope, I would have him look at (biopsy) both the esophagus for EE and the intestine for Celiac.

Good Luck with your quest for answers.

[Wthrman13]

Thanks for the info, Darn210. I already mentioned the swallowing problem to my doctor, and I plan to mention it to the GI when I see him or her.

I went and got a copy of my blood test, so here are the relevant numbers.

Antigliadin Abs, IgA: 2 U/mL

Antigliadin Abs, IgG: 41 U/mL

tTG IgA: 1

tTG IgG: 1

Endomysial Antibody IgA: Negative (I assume this is just the interpretation of the above two tTG tests)

Immunoglobin A, Qn, Serum: 52

The IgG test is the only one that shows elevated levels, and the Immunoglobin A test shows a deficiency, if I'm reading the results correctly. Thus, it looks like, again, if I'm interpreting the results correctly, that the results of the blood test are inconclusive, hence the referral to the GI.

[Jestgar]

Immunoglobin A, Qn, Serum: 52

Not sure what this means...

[Wthrman13]

Immunoglobin A, Qn, Serum: 52

Not sure what this means...

Well, the test shows normal ranges for each of the different antibody tests. For the IgG test, which I showed as 41, the normal range is 0-9. For the Immunoglobin A, Qn, Serum (perhaps short for quantity of Immunglobin A in the serum?), the normal range shows on my sheet as 70-400, whereas my test result is 52.

Both of these lines are highlighted in my report (the high IgG, and the low Immunoglobin A).

[Darn210]

Well, the test shows normal ranges for each of the different antibody tests. For the IgG test, which I showed as 41, the normal range is 0-9. For the Immunoglobin A, Qn, Serum (perhaps short for quantity of Immunglobin A in the serum?), the normal range shows on my sheet as 70-400, whereas my test result is 52.

Both of these lines are highlighted in my report (the high IgG, and the low Immunoglobin A).

I believe you are correct that you are showing an IgA deficiency and I think that means that the results for your other IgA tests are not subject to the labs usual test ranges.

[Guest Doll]

My 2 cents...Karen, bingo on mentioning *Barret's esophagus*. This isn't directly related to Celiac, but it *is* directly related to GERD, which Celiacs seem to have more often. However, there are other conditions that can cause these symptoms, and only a doctor can determine the cause. If your throat is *sweeling*, this is a symptom of a true wheat allergy and can be very dangerous (obviously). Luckily, to me anyway, this does not sound like what you are describing.

As for your test results, IgA deficiencies are more common in Celiacs, and perhaps iin people with autoimmune diseases in general. All that means is that your body creates lower than normal levels of IgA antibodies, so your Celiac tests looking for IgA responses will likely be inaccurate and falsely negative. Your doctor is NOT all clueless, at least he tested for your total IgA to make sure you do not have a deficiency. Many doctors don't, and it is a good reason why some people get false negatives.

It sounds like your doctor wants to send you for a biopsy, which if you want an official dx, is the right thing to do. Also note that some other GI diseases can cause some of the Celiac tests to become elevated.

I don't know why the doctor called it a "wheat allergy" (He SHOULD NOT be doing that) but perhpas if he is not aware of your brother's dx, he didn't think he had the time to explain Celiac to you. Most people are clueless about Celiac/gluten, as we are reminded anytime we try to eat out...sigh...

I think with your symptoms, family history, and elevated IgG result, you are most likely Celiac. Sorry to say.

BUT, it is a treatable disease, and better yet, treatable with diet. Follow up with the GI.

Welcome to the board and feel better soon!

[Wthrman13]

Thanks for the reply. I did not mean to be hard on the doctor. After all, he has the M.D., and I don't, and he could end up being right, theoretically, that perhaps I have a bonafide wheat allergy, in addition to, or possibly instead of celiac disease. It all depends on what happens with the GI. At this point, almost regardless of what the GI says, I'm seriously considering going on a gluten-free diet in the near future (but obviously not before any biopsy) just to see what it does.

[mftnchn]

Good plan I think. Just be aware if you have negative tests and do the dietary testing: You have to be very vigilant about the diet and give it plenty of time. You gut heals slowly, some people notice improvement right away, but not everyone.

I saw one person on the forum that had no improvement for a year, and then suddenly improved.