Undiagnosed Celiac?

[junky]

This may turn out to be a novel of a first post, but here it goes...

The last week of this past May, I became deathly ill after eating at Red Lobster. My family and I assumed automatically that it was food poisoning. I had initially vomitted a lot, but after that, just severe nausea, pin-prick feelings on my skin, chills and hot flashes, diarrhea/loose stool, pretty low blood pressure [double digits on the top and bottom], racing pulse [at my worst, it was 140], and extreme fatigue. I was treated by three different doctors at a walk-in clinic, adding to that an ER visit. All of the medicines given to me [Phenagrine, Donatol, Zophram, Nexium] did practically nothing but make me fall asleep. I'd still wake up with nausea. The only tests they ran were routine blood tests, urine tests, and one X-Ray. Nothing abnormal came up. After a week of being sick though, I was better. In fact, I was well for another couple weeks.

Well, I moved to a new town and got pretty much settled. But on the 25th of June, after eating a frozen pizza I might add, I became severely ill again. I went to the ER that night. They did the regular blood and urine tests. I'm also on Lithium, so they checked the toxicity. The problem though, I hadn't taken my Lithium the prior night and not yet that night, so if my Lithium levels came back normal, it's possible I still could have gotten toxic.

After talking to my psychiatrist, he said that even if I had gotten Lithium toxic, it would have worked out of my system by now. I'm still sick though, going on week 3, almost starting week 4. Multiple doctors have now ruled out everything with fecal exams and cultures, x-rays, adominal ultrasounds, and CAT scans. All negative for anything. My GI doctor and family practitioner are now pointing their fingers at IBS as a last ditch effort. I'm still suspicious of underlying problems, because my symptoms seemed way too severe to be IBS.

Right now my symptoms are worse in the morning, right when I wake up [sounds like morning sickness, but after 10 pregnancy tests, I'm still negative, hah]. I have nausea and diarrhea, and my diarrhea seems worse right after I eat, along with sometimes my nausea.

Today I was told to check into getting tested for gluten allergies. Could this be Celiac? Anyone else have symptoms similar to mine? I think I've read a few of you that do. Is it normal for me to get these symptoms out of the blue later on in life [i'm in my 20's]? What causes trigger the disease into popping up like this when you have previously shown no symptoms? Can the blood tests be done at most doctor's offices, or should I go to a specialist? Should I stick to my normal diet for the moment instead of going gluten-free before the testing? Any information is appreciated.

Thanks!

Katie

[flagbabyds]

what i am going to say is annecdotal and i don't know about the scientificnes of it.

i'm pretty sure i've heard about some environmental trigger that could trigger the onset of symptoms, and you said that you moved, which could possibly cause that. i know that 5 people in my neighborhood were diagnosed the same yeat with celiac. You symptoms do sound like celiac disease, which can be triggered at any age.

if you want a confirmed diagnosis from your doctor, then yes you should stay on a normal deit so the proper testing can be done (bloodwork and a small intestinal biopsy) and the proper results will show.

[confusedks]

I would have to agree with Molly. I have had many of the same symptoms you had and they have all gone away (well, 90%) since I have been gluten free. If I were you, you could have your GP run blood tests...make sure that the test includes these..."IgA endomysial antibodies (EMA), IgA tissue transglutaminase (tTG), IgG tissue transglutaminase and Total IgA antibodies. " If you want more info, you can go to www.celiac.org Also, STAY ON GLUTEN!!!!! If your current GI isn't open to the idea of testing you for Celiac...get a referral (if you post in the doctors section and tell people where you live, they may be able to make suggestions) and when you call the new doctor make sure to ask if the doctor is current on Celiac Disease because you don't want to waste time going and seeing them and them looking at you like they have never heard of celiac disease.

Good luck!

Kassandra

Keep us posted as to what happens.

[Guest Doll]

I second the above post. It is thought that an environmental trigger (such as a bacteria or virus) triggers the onset of Celiac Disease in those genetically at risk. This can happen at *any* age. It is a myth that Celiac is a children's disease, or that you are born with it. Celiac Disease is an autoimmune disease and not an allergy to gluten (although some people do have gluten allergies).

Celiac Disease has been linked to Bipolar Disorder (assuming that's why you're on Lithium).

My case is exactly like yours. I *never* had any GI (stomach) issues EVER. I never had stomachaches, never reacted to gluten, never even knew what heartburn felt like, never had diarrhea...etc. My Celiac symptoms basically started to show up out of the blue at age 21. They started out subtle, then progressively got worse. I was severely ill when I was finally diagnosed just under 2 years later. I was sick with a virus and under a lot of stress just prior.

If all of your other tests have checked out negative, and you do not seem to have any active infection, then it is possible that you do have Celiac. You need to keep eating gluten to get a positive test result, so don't go gluten-free until you are tested. Proper testing is crucial to getting a diagnosis.

P.S. I almost forgot about this...but the summer before my symptoms started showing up, I also had severe food poisoning....hmm.....

[mftnchn]

Yes, it sure sounds like testing for celiac is one thing that should happen. There are 5 blood tests to get for the whole celiac panel. Someone here can tell you all five.

Also be aware that blood tests can be false negative but are unlikely to have a false positive. Also people can have negative blood tests but positive biopsy.

Both blood tests and biopsy should be done before going gluten free.

Then if all the tests are negative, a gluten free diet trial can still be useful. Some people are negative on all the tests but have a highly positive response to the diet.

Finally, if you do have celiac, the intestine takes 1-2 years in adults to heal. That means that symptom improvement can take awhile. You might see a response in a few days, but some people don't see improvement for months or even the first year! So be patient.

[gfpaperdoll]

Doll, I think that you are doing a dis-service to telling people that it is a myth that you are born with celiac. Can you prove that no child has ever been born with celiac? I think not, if you have read these boards. Do you have children? Were they all born healthy? Well your children might be born healthy because you would not be eating gluten while pregnant. I remember when pregnant women were allowed to smoke & drink alcohol while pregnant, the doctors did not think that it hurt them, they were still pregnant & the babies were not malformed...

My mother hated me because I was so sick, the big D, the constant crying for over a year, from "colic" always sick, I would be dead but I had extended family & a grandmother that would try to feed me & take care of me. I had a son that nearly died also, all I knew was that he could only eat rice cereal & bananas & soy formula. Then when he was a year & a half I did something totally insane for the times, I went to the health food store & bought rice crackers for him. I was totally ridiculed for that & my doctor said that it was un-necessary. & guess what, he had a son that was born sicker than he was, they called it failure to thrive in the womb, well he did not thrive outside it either, that was 11 years ago & I still did not know about celiac, but I knew enough to insist that he only have rice cereal, my daughter in law almost hated me over it, but the baby had awful projectile vomiting & it helped...

So excuse me if I think that you do not know what you are talking about with this "you cannot be born with it" statement, I mean if we need wrong opinions we can go to the doctors office & pay for it.

[gfpaperdoll]

re babies being born with celiac. During World War II they knew that babies were born with celiac & they put them on a diet of rice, bananas & one other thing, some kids ate this for years. The medical doctors thought this was a childrens disease and that you outgrew it.

What really happened is the babies died or they lived, the ones that lived would exhibit the various other symptoms but maybe not constant diarrhea, & then they went into puberty which we now know that the hormones of puberty gives you an abatement of symptoms as does pregnancy for some women.

Now the baby boom generation that were "rice & banana" babies are shocked to learn that the reason that they are in such bad health is that they have had celiac all along & it did not "go away".

Most school nurses today, the older ones, will tell you that celiac is only a childrens illness, because that is what they used to teach in medical school.

So I am sick of hearing people say that it is a myth that babies are born with celiac. do some research...

[Guest Doll]

Doll, I think that you are doing a dis-service to telling people that it is a myth that you are born with celiac. Can you prove that no child has ever been born with celiac? I think not, if you have read these boards. Do you have children? Were they all born healthy? Well your children might be born healthy because you would not be eating gluten while pregnant. I remember when pregnant women were allowed to smoke & drink alcohol while pregnant, the doctors did not think that it hurt them, they were still pregnant & the babies were not malformed...

My mother hated me because I was so sick, the big D, the constant crying for over a year, from "colic" always sick, I would be dead but I had extended family & a grandmother that would try to feed me & take care of me. I had a son that nearly died also, all I knew was that he could only eat rice cereal & bananas & soy formula. Then when he was a year & a half I did something totally insane for the times, I went to the health food store & bought rice crackers for him. I was totally ridiculed for that & my doctor said that it was un-necessary. & guess what, he had a son that was born sicker than he was, they called it failure to thrive in the womb, well he did not thrive outside it either, that was 11 years ago & I still did not know about celiac, but I knew enough to insist that he only have rice cereal, my daughter in law almost hated me over it, but the baby had awful projectile vomiting & it helped...

So excuse me if I think that you do not know what you are talking about with this "you cannot be born with it" statement, I mean if we need wrong opinions we can go to the doctors office & pay for it.

Do you have Dx'd Celiac Disease? Does your son? If you don't, then your story may not about be about Celiac Disease, right? People can have enzyme deficiencies from birth that can cause all of your symptoms, but that is not Celiac Disease.

It would be almost impossible to be born with an autoimmune disease, which is what Celiac is.

Your condition is just as valid as a Celiac's, but that doesn't mean that's what it is.

Also, babies can get Celiac shortly after birth if they are exposed to the trigger, whatever it is. That doesn't mean they're born with it though, because they're not.

I do not have any children, so I can only imagine how hard it is to have a sick infant. I am glad you figured things out for your son and yourself. I am glad you are healthy again after going gluten-free. But that doesn't mean that you have Celiac Disease.

Celiac is NOT 100% genetic, like all other autoimmune diseases, even though it is a "genetic" disorder.

From Celiac.com

Celiac.com 05/02/2002

[lfij]

you people sure get grouchy with eachother. have a gluten-free cookie and calm down...

[junky]

Thanks for the responses Seems like the test would be the best thing to do in this case.

I did have one question though...can celiac make you sick even when you haven't eaten? I know I've had quite a few days through this ordeal [although not recently] where I was still pretty sick, but I hadn't eaten because of it. Any thoughts?

[Guest Doll]

you people sure get grouchy with eachother. have a gluten-free cookie and calm down...

Lol! All I can say is that I hate feeling attacked whenever I try to mention anything that is supported by science. I have forgotten that I can never say "never" on this board. If people on this board say that we need gluten-free body glitter because we can get glutened by it, that's just accepted like a heard of sheep. But if I come out and say that gluten has been scientifically proven to NOT be absorbed through the skin (assuming that's what they think), people think I'm lying, misinformed, don't believe me, or just don't get it. Why is this bad if people believe this? It's not really, it just creates more hassle then needed for the majority of people who don't need to specially buy these things gluten-free. It also creates misinformation, which is always bad in my opinion.

Still people here think the gluten-free diet eliminates your risk of all Celiac related cancers (Celiacs on the diet still have a higher risk for a particular type of cancer) and 100% stops the development of other autoimmune diseases. It doesn't. Why is this bad if people believe this? Misinformation for one, and then you get people thinking that the gluten-free diet will *cure* their MS or Crohn's, or prevent other autoimmune diseases, which is just false hope.

People are spending money on fecal testing which can give false positive results to non-Celiac healthy people. They end up cutting out more and more foods, never feeling any better, and then find out they have an entirely different issue. This may go on for a year or more. Meanwhile, their cancer or bowel infection is silently spreading....Why is this bad? People are wasting money when they could be just trying the diet, and they may have another/different issue that needs treatment.

Some people say they are Celiac when they are not. They still have a valid condition and a reaction to gluten, but they shouldn't say they have Celiac if that's not what they have. Celiac is an autoimmune disease, not a catch all phrase for unexplained IBS or for those who have lost weight on the gluten-free diet. Why is this bad? As mentioned here by someone else in another thread, it undermines the severeity of the condition and all of the progress made with restaurants. The lay public (and yes they are that dumb) begins to think that the gluten-free diet is a common fad, now "everyone" is saying they have Celiac, and Celiac becomes equated with a not medically necessary "fad diet". If CC's not taken seriously for me, I might die (or at least have a seizure). Just because someone *without* Celiac lost weight on the gluten-free diet (by cutting out processed foods and trans fats) and decided that since they have stomach cramps once a month as well, they must be Celiac.

I am all for people needing to be gluten-free for other reasons of course (I.e. non-Celiac gluten intolerance)...but don't call yourself Celiac if that's not what you have.

There's so much misinformation on this board that it makes it very frustrating...There are also some amazing and helpful people, so that makes up for it. ;p

Thanks for letting me vent....off my soapbox now....

[Guest Doll]

Thanks for the responses Seems like the test would be the best thing to do in this case.

I did have one question though...can celiac make you sick even when you haven't eaten? I know I've had quite a few days through this ordeal [although not recently] where I was still pretty sick, but I hadn't eaten because of it. Any thoughts?

Possibly and even likely if you still have a lot of intestinal damage. If you're not really careful about cross-contamination, then you could still be getting enough gluten to cause a delayed reaction over time.

That said, you could also just have a stomach bug (viral bowel infection) that is not related to Celiac and will go away on it's own.

If the gluten-free diet does not help, or you are still getting ill despite not eating, nake sure your doctor screens you for other possible GI diseases.

[brazlebridge]

Junky,

I read you post and I cannot believe the similarities to what happened to me...I ate at Red Lobster and became so violently ill that I had seizures. That was Jan. '05. I was bleeding for a year and didn't know it till I changed Dr.'s. My new Dr. decided it was celiac the 2nd appt. My husband spent thousands of dollars on Dr.'s before I went to a new one out of fear and frustration. My sis is bi-polar and becomes ill like I used to. My Mom and brother have bi-polar too. I don't but that was plain luck. My Mom has Dairy intolerance, Kidney Disease, and CLL Lukemia. No one in my family will get tested and they are all sick. Good for you for trying to figure it out! I hope you find your answers here...everyone is really helpful...I read the posts regularly but I don't often post. But, your post touched me and I will pray for you... Pamela

[junky]

Possibly and even likely if you still have a lot of intestinal damage. If you're not really careful about cross-contamination, then you could still be getting enough gluten to cause a delayed reaction over time.

That said, you could also just have a stomach bug (viral bowel infection) that is not related to Celiac and will go away on it's own.

If the gluten-free diet does not help, or you are still getting ill despite not eating, nake sure your doctor screens you for other possible GI diseases.

I have been screened for quite a few GI diseases, although I'm not sure exactly what they were, which makes it hard for me to research and ask the doctor if this could be it. You see, for some reason, the doctors here aren't taking me seriously. In fact, the first night I had initially gotten ill, I was told by a triage nurse at the ER I was having a panic attack [mainly after she found out I was taking an anxiety medication and my pulse was fairly high]. I couldn't walk though [severe abdominal pain] and was wheelchair bound for a few hours. Then my GI doc tried to make it seem that IBS was almost purely psychological, which is not what I've heard.

They did also do a fecal exam and culture to test for GI bacterial infections, just in case if I did happen to have food poisoning and it just didn't work itself out.

I have to wait a while for the test though, unless I can get my appointment bumped up. I'm going on a month of being sick, so this is all very upsetting and tiring.

Junky,

I read you post and I cannot believe the similarities to what happened to me...I ate at Red Lobster and became so violently ill that I had seizures. That was Jan. '05. I was bleeding for a year and didn't know it till I changed Dr.'s. My new Dr. decided it was celiac the 2nd appt. My husband spent thousands of dollars on Dr.'s before I went to a new one out of fear and frustration. My sis is bi-polar and becomes ill like I used to. My Mom and brother have bi-polar too. I don't but that was plain luck. My Mom has Dairy intolerance, Kidney Disease, and CLL Lukemia. No one in my family will get tested and they are all sick. Good for you for trying to figure it out! I hope you find your answers here...everyone is really helpful...I read the posts regularly but I don't often post. But, your post touched me and I will pray for you... Pamela

Yeah, you all have been very helpful. In a way, I don't want this to be the diagnosis, but I'm so desperate right now. And it seems to fit my symptoms, unless I have a severe case of IBS. As I said above, I'll be on my fourth week of being sick this next Monday. It's not helpful mentally having to be this sick all the time, and dealing with my first move away from my parents. I haven't had any time to get settled here in town.

The Bipolar connection really stuns me. I'm not a traditional case of bipolar, because my cycles are way too rapid for rapid cycling in an adult, although it suits a bipolar child more. I have multiple mood swings throughout the day. It's amazing that celiac could be linked to mental issues. Of course, I'm still learning more about it, hah.

[gfpaperdoll]

Junky if you test thru Enterolab.com & get the gene test you could find out what genes you have.

If you have double DQ1 (runs in my family) that would explain your neuro symptoms, those of us that are double DQ1 are all too familiar with the neuro side effects of eating dairy & gluten & for most of us a variety of other foods. I think if you have a DQ1 & a DQ3 or a DQ2 & a DQ1 etc that you do not have as many problems, but double DQ1 I think is really bad, I know there are exceptions but I know a lot of double DQ1 people & we have problems!!!

There are a lot of people out there with problems & do not know they are double DQ1 because they got there gene test from a lab that did not test for DQ1 or DQ3.

for me that also means not eating othe grains except for rice (not rice flour) & corn. & I do not eat those on the same day