New Here - Diagnosed Ibs, Testing For Celiac. Kinda Bummed Out And Could Use Some Advice.

[portrgirl]

Hello - I could use some wise advice from all of you celiac-informed.

I've always had "stomach issues." When I was in grade school, I would wake up in the middle of the night w/ horrible pain on of my sides, unable to straighten my legs or move. I wouldn't be able to sleep and sometimes missed the morning of school. Tylenol & a heat pad helped as did finally having a bm. Now I'll have times when I feel hot/cold, nauseous, painful cramps, feel like passing out but this happens very infrequently.

I usually feel bloated/not empty, am always constipated and generally feel unwell/uncomfortable in that area, especially after eating. I often have headaches. I've also always felt "fuzzy" and couldn't/can't grasp things or think clearly often. Through high school to present, I've always had knee pain, which I thanked my years of dance for, but my GI doctor noticed and asked if I knew I had arthritis. I also have problems with anxiety.

I was flippantly diagnosed with IBS almost two years ago (told to eat more fiber and destress, neither worked). I finally went to a GI doctor a couple of months ago and was again told I have IBS, only various blood tests were also ran - the ones that came back abnormal she said were due to a viral infection. She gave me medications and told me to come back after I'd tried them (I haven't yet). My lactose intolerance test came back negative even though milk and cheese make me feel sick to my stomach and *I swear* gives me acne (no allergy to dairy either).

I also saw an allergist to pin point the allergies I've had my whole life. I reacted to wheat and barely on my skin test and was told to try a wheat-free diet for a week. I went for two weeks but nothing was different while off of it or when eating it again. I was then told I should be tested for Celiac and that even if the results come back negative to still try a gluten-free diet for 3-4 weeks. My IgA EMA came back negative. I asked to get the full panel, which he agreed on. I'm now waiting on the results for the Total IgA, tTG Iga and TgA IgG. He still wants me to try a gluten-free diet if it comes out negative.

The point to all of this is, sometimes I feel like I should just suck up the bit of pains that I have and live a "normal" life. I feel like I'm making a bigger deal out of this than it really is. I feel like I'm being rediculous and winey and a hypocondriac, especially when I read how bad others' symptoms are compared to mine. I feel like I'm annoying everyone around me, making their lives harder and like I'm just trying to find *something* wrong with me so I can say "I have ______."

One minute I want to be diagnosed celiac bc I'll know exactly what to do to fix me, while the next I don't and just want to be normal and forget about all of this again. And I'm afraid I'm going to have a huge medical bill even w/ my insurance all for something that could be "fixed" with doses of Milk of Mag. And what if my stomach uncomfort is just in my head or something that everyone deals with?

Any comments? Suggestions? Advice?

(Sorry this is so long) TIA.

[Ursa Major]

Okay, lets get this straight right from the start: You are definitely NOT ridiculous, whiney and a pain, nor are you a hypochondriac, no matter how many people make you feel this way!

IBS is just that, an irritated bowel. There is a reason for it to be irritated, and just declaring IBS a valid diagnosis and treating symptoms is a lazy way for doctors to get rid of you, rather than finding out what is really wrong.

Brain fog is a very common symptom of celiac disease. So are headaches, joint pain and all your other symptoms. You new doctor is right. Even if the celiac disease panel comes back negative, you should try the gluten-free diet. Because if you don't have celiac disease, but are rather gluten intolerant, all tests will come back negative (other than the Enterolab tests, that is). But you will be just as sick, and would need to be gluten-free for life.

So, you might as well go gluten-free right now, as you are supposed to anyway, no matter what the test results are.

[Hells Bells]

No don't suck it up, what have you got to loose at the moment when you are feeling soo bad. Why not try a simple wholesome gluten-free diet for a couple of weeks and see if there is a difference. You possibly may be simply intolerant though many of your symptoms are suggestive of celiac.

The blood tests are only screening tool and should not be used to exclude celiac disease.

My doctors said to me after years of stomach troubles and increasing undiagnosable pain, its only ibs, its all in your mind, you are anxious take these sedatives.

THEY WERE WRONG.

Try gluten-free listen to your body.

[portrgirl]

Thank you Ursula... it's really nice to hear someone tell me this. My family thinks I'm nuts, my doctors don't seem to really believe me (except for this new one who is actually the covering physician for the first allergist I saw - she's on vacation) and while my boyfriend is very supportive, he's getting understandably sick of hearing me talk about this.

I feel like I missed out on a lot in my childhood because of "brain fog." I hadn't heard about it before but it makes sense. I didn't/don't have trouble learning... but for instance, I just couldn't grasp the idea of soccer, so I quit. Now that I'm a new college grad and in the working world, I'm having similar feelings only about my job - I just can't grasp some things but it's not that I don't understand it. ?

Won't the anti-gliadin antibodies blood test show gluten intolerance if it's positive? Since it usually is even when the other tests are negative, so it's passed of as a false positive? I feel like I need some kind of diagnosis to tell people so I'm not looked at as crazy and to keep myself on the diet...

I feel very lucky that my doctor wants me to try the diet regardless of what the tests say; however, he wants me to wait until after the holidays so it's a bit easier (and it'd be bad to have to explain to everyone why I wasn't eating).

Thank you so much for the response... I really am just so unsure about everything right now.

[GFBetsy]

Have you had your gall bladder checked? Sometimes those reactions to milk/cheese are really reactions to the fats in them, and not the lactose or the dairy itself. Gall bladder problems could also cause pains on just one side of your stomach . . . though I don't remember which . . . tiredofdoctors (a board member) knows, though . .. maybe she'll jump in.

[portrgirl]

Thanks Hells Bells - I'm really trying to not go back to ignoring it all. I figure if it was uncomfortable enough for me to see doctors about it, I shouldn't stop just because I'm feeling this way - although it is tempting.

While my GI doc was feeling around my stomach area, I asked her if what she was doing was supposed to hurt because it was incredibly uncomfortable. She responded by looking smug and saying that she learned to watch people's eyes for pain instead of relying on them to tell her since people often make it up. She never told me what my eyes were telling her, but it DID hurt and she made me feel like I was making it all up.

Is a gluten intolerance basically gluten allergy? (Which may be why wheat and barley showed up on my allergy test? I didn't test for the other gluten containing grains.) Or is celiac just one type of gluten intolerance?

Have you had your gall bladder checked? Sometimes those reactions to milk/cheese are really reactions to the fats in them, and not the lactose or the dairy itself. Gall bladder problems could also cause pains on just one side of your stomach . . . though I don't remember which . . . tiredofdoctors (a board member) knows, though . .. maybe she'll jump in.

I haven't. I guess I don't really know what my gall bladder does for me, so I never thought there might be an issue. If I'm remebering correctly, my pain when I was younger was always more pronounced on my right side. I live in WI and have always loved cheese (and drank nearly a gallon of milk/week), so finding that it made me sick (just a couple months ago) REALLY made me unhappy.

Another question for anyone: Is improvement of symptoms on a gluten-free diet also proof of celiac or gluten intolerance?

[portrgirl]

I looked up information about gallbladders and found the following:

Chronic cholecystitis (biliary colic)

This is a chronic inflammation of the gall bladder and causes:

* sporadic pains in the middle of the upper abdomen, or just below the ribs on the right side.

* pain which becomes worse over an hour and then stays the same.

* the pain may spread to the right shoulder or between the shoulder blades.

* the pain can be accompanied by nausea and vomiting and sometimes excessive wind.

* the attack can last from a few minutes to two to three hours before getting better.

* the frequency and severity of attacks is very variable.

* attacks can be triggered by eating fatty foods such as chocolate, cheese or pastry.

That's exactly what I experienced (except for the fact that I always felt much better after having a bm, but that wouldn't happen until the pain decreased enough for me to walk - or crawl). So precise that it's kinda scary. Why didn't my parents take me to a doctor? (Rhetorical question) All I'm finding is that it happens in older adults and is rare in children except for when they have:

* Spinal injury.

* History of abdominal surgery.

* Sickle-cell anemia.

* Impaired immune system.

* Intravenous nutrition.

I have scoliosis (spinal injury?) but none of the others.

[Nancym]

The point to all of this is, sometimes I feel like I should just suck up the bit of pains that I have and live a "normal" life. I feel like I'm making a bigger deal out of this than it really is. I feel like I'm being rediculous and winey and a hypocondriac, especially when I read how bad others' symptoms are compared to mine. I feel like I'm annoying everyone around me, making their lives harder and like I'm just trying to find *something* wrong with me so I can say "I have ______."

How do you suck up to things like autoimmune diseases, colon cancer, brain damage, liver damage, vitamin deficiencies? Those are just a few of the things that might plague you if you choose to "suck it up" just because you're afraid of annoying people.

Personally, I'd say "screw that"! I'd rather be annoying. Lots of people have to wait until they're elderly to become annoying, I get to do it much younger. *cackle*

Your doctors sound like absolute jerks. Fire them!

[Ursa Major]

You see, if you have celiac disease, you have an impaired immune system. Gallbladder disease is very common in people with celiac disease. We did a survey here a while ago to see how many of us had gallbladder surgery, and you wouldn't believe the numbers.

Gallbladder attacks often mimic heart attacks, too, and often the medics can't tell the difference, and the doctors only can after doing tests. That is what happened to me about 13 years ago.

And yes, if you greatly improve on a gluten-free diet, and get sick again when you challenge with something containing gluten after a while, you really can be sure that gluten is a problem and needs to be avoided.

You GI doc sounds like a quack, don't go back to her. The idea of claiming she can always tell if people are in pain by their eyes, because often they make it up! How arrogant!

[portrgirl]

You see, if you have celiac disease, you have an impaired immune system. Gallbladder disease is very common in people with celiac disease. We did a survey here a while ago to see how many of us had gallbladder surgery, and you wouldn't believe the numbers.

I guess that would be correct; however, do I necessarily have Celiac (as opposed to a gluten intolerance/sensitivity) if the blood tests all come out negative or only the anti-gliadin test comes out positive?

And yes, if you greatly improve on a gluten-free diet, and get sick again when you challenge with something containing gluten after a while, you really can be sure that gluten is a problem and needs to be avoided.

OK, that's good that one of my doctors seems to understand this. But again, it doesn't necessarily mean it's celiac, correct? Just a gluten intolerance/sensitivity (like an allergy?)?

You GI doc sounds like a quack, don't go back to her. The idea of claiming she can always tell if people are in pain by their eyes, because often they make it up! How arrogant!

Yes. She didn't look very professional either - very bag ladyish - which is fine, but if you're in this profession, look the part? She also said how she wants to teach me to read my body and not rely on medications, yet the only thing she did for me was give me two RXs and instructions on mixing Milk of Mag with applesauce.

[Ursa Major]

No, gluten sensitivity is NOT like an allergy. And it is not better to have it, opposed to celiac disease, just different. celiac disease will destroy your villi and cause major malnutrition. Many people (including doctors and scientists) believe that gluten sensitivity often leads to celiac disease, and is just an earlier stage of it.

Gluten sensitivity appears to cause more neurological symptoms than celiac disease, like neuropathies, depression, schizophrenia, brain fog, MS like symptoms (and yes, people with gluten sensitivity are often misdiagnosed as having MS), fibromyalgia symptoms and many others.

The anti-gliadin test will not come out positive if it's not celiac disease. The villi have to be pretty much destroyed for any of the tests to come out positive. Meaning that by the time you have positive tests, you are in big trouble and might have permanent damage already. Not really a good thing.

As I said before, the diet is the best test. And reliable. If your body reacts to a food, you need to eliminate it. If you feel better without that food (or component of food), and when you reintroduce it you have a reaction to it, that means you need to stop eating it. As easy as that.

[portrgirl]

Oh how interesting... So celiac is really just a specific immune reaction to gluten sensitivity, not actually the technical name for gluten sensitivity.

I'm glad to hear things that back up my one doctor's insistance for me to try the diet because it's the real test - I wasn't sure if he was correct. Perhaps I should have listened to him instead of asking to have the rest of the celiac panel test...

I've eliminated foods from my diet on suspision of an allergy (later confirmed) and didn't think anything of it. I'm not sure why I'm so hesitant to remove gluten from my diet if it makes me feel better... although, since it's in everything, I guess I feel like I need a specific reason (other than "I just feel better when I don't eat it") in order to be taken seriously. "Gluten sensitive" I'm sure would make people think "allergy." Hm.

[Ursa Major]

You could say "gluten intolerant", which is the same as gluten sensitive, but sounds more serious. And if people think it's an allergy, they should think serious allergy. Nobody would think a peanut allergy is not serious, either.

Ah, now you're getting it. Yes, celiac disease is just one of many possible ways a gluten intolerance can show up. It's about time some doctors understand that. You doctor is rare, and actually knows what he is talking about.

I know it isn't easy to eliminate gluten, because its in so many things. The easiest way to avoid it, is to cook from fresh ingredients, and to pretty much eliminate all processed food. That way you know exactly what's in your food.

I am intolerant to so many more things, I wished I'd only have to avoid gluten, I think that would be EASY in comparison!

It is all a matter of perspective. Try looking at all the things you still CAN eat, instead of what you can't. That will make it easier. Make sure you have some comfort foods around that you can eat, when you feel like a treat, or when you feel overwhelmed.

[Riayn]

I am in the same boat as you are portrgirl. I was diagnosed 5 years ago with having IBS without any testing at all being done. I was put on tablet, told to avoid foods that made me sick and sent home. Five years later, I still have all the same problems.

This time around I am making them do every single test available. So far my blood test came back negative, but I have been referred to a gastro doctor, who I will see today.

Hopefully he will want to do a biopsy for Coeliac disease and have a look around to make sure there is nothing abnormal.

It is extremely frustrating.