"silent" Celiac

[psusharon]

Hi again,

Even though I am very in tune with my body and I know when something is wrong, I suffer from a fear of being my own advocate at the doctor's office. I have done much research about celiac over the past month and I understand that there is a wide spectrum of symptoms and I have noticed on this board that people have suffered in their teens and then felt relief for several years and then suffered again. I mentioned earlier that I had a lot of GI trouble in my middle school years and displayed the "classic" celiac symptoms at that time, but since I became sick again, my symptoms are virtually all non-related to the GI tract. I have read this to be "silent" celiac, but I honestly don't know b/c I am new at this. So here is my point, is anybody comfortable sharing an experience about mysterious symptoms that were not GI related? For example, after being off of gluten and reintroducing it into one meal, I had a migraine the following day and had serious trouble staying awake and mustering up any energy. I don't want to run in to my doctor's office so sure of myself and be completely off base. To hear that somebody else might have had a similar situation (ie, atypical "textbook" celiac symptoms) it might help me push for that second opinion. I hate to sound like a pushover with doctors when it's my health at stake, but you put me in front of an M.D. and my confidence crumbles.

Meanwhile, I will not go back to eating gluten b/c I lived through how horrible I felt and it has also helped me be much more aware of what I am putting in to my body (which is very beneficial for a person with diabetes).

I really appreciate any input. This disease is very ambiguous and learning from people going through it or who have gone through it feels like a blessing when I all I want are answers that make sense.

[darlindeb25]

What you are discribing is not "silent" celiac. A silent celiac is someone who has no symptoms. They do not have anything going on, not to their knowledge. They go to the doctor, maybe for a physical for work, or something totally unrelated, and tests results come back, say blood work or something, proving celiac disease--totally out of the blue--that's a silent celiac.

Now, what you are discribing is another symptom of being glutened. When I first when gluten free, I had violent reactions, with severe stomach pains, diarrhea--the works. Now, after 8 yrs, I have neurological symptoms, which include migraines. In January, I was glutened by an OTC medication. I took 3 doses of it, and within 24 hours, the reaction hit me. First, I got very shaky, severe headache, my heart started racing, my blood pressure shot up, then nausea set in, which all caused me to panic, and then, severe brain fog. This all hit me within minutes--one minute I was fine, and bam! I had to take a Xanax to calm me, which took well over an hour to settle me down. The brain fog lasted over 12 hours or more. The glutening itself effected my tummy for over 2 months, it was the worse glutening I have ever encountered. I lost 24# from this glutening. BUT, it also kicked my metabolism back into working, so I guess I should be happy I was glutened, because now, I have lost 40# and am at a different plateau in my life.

Anyways, I would say your headache is a symptom that you were glutened and you should get back on the gluten free wagon! There are certainly "testbook" symptoms, but there are also "non-textbook" symptoms too. Many of us have the same symptoms, many of us have individual symptoms. Doesn't make any of us right or wrong. Makes us all gluten intolerant together though!!!

[Darn210]

Meanwhile, I will not go back to eating gluten b/c I lived through how horrible I felt and it has also helped me be much more aware of what I am putting in to my body (which is very beneficial for a person with diabetes).

Well, it sounds like you have done a trial diet and have figured out that you react to gluten. I want to throw something out there for you though . . . you're planning to talk to your doctor but you are already gluten free. In order for your blood test to have a chance at being accurate, you need to be on gluten for awhile (amount of time recommended varies from 6 weeks to several months depending who you talk to). So I just wanted to ask . . . What do you want to accomplish with your doctor? . . . Just to let him know that you have come to this conclusion through a trial diet and challange . . . which perfectly acceptable and lets you know that you need to steer clear of gluten . . . or to get an official diagnosis? . . . because (unfortunately) most doctors are going to want to do blood testing (initially) in order to pursue a formal diagnosis. But like I've said, you don't need a formal diagnosis to eat gluten free if it makes you feel better.

You may be lucky and your doctor may be open to your trial diet/challenge as a means of an official diagnosis. Plus, you could also get the celiac gene test done.

[cindyt108]

Hi again,

Even though I am very in tune with my body and I know when something is wrong, I suffer from a fear of being my own advocate at the doctor's office. I have done much research about celiac over the past month and I understand that there is a wide spectrum of symptoms and I have noticed on this board that people have suffered in their teens and then felt relief for several years and then suffered again. I mentioned earlier that I had a lot of GI trouble in my middle school years and displayed the "classic" celiac symptoms at that time, but since I became sick again, my symptoms are virtually all non-related to the GI tract. I have read this to be "silent" celiac, but I honestly don't know b/c I am new at this. So here is my point, is anybody comfortable sharing an experience about mysterious symptoms that were not GI related? For example, after being off of gluten and reintroducing it into one meal, I had a migraine the following day and had serious trouble staying awake and mustering up any energy. I don't want to run in to my doctor's office so sure of myself and be completely off base. To hear that somebody else might have had a similar situation (ie, atypical "textbook" celiac symptoms) it might help me push for that second opinion. I hate to sound like a pushover with doctors when it's my health at stake, but you put me in front of an M.D. and my confidence crumbles.

Meanwhile, I will not go back to eating gluten b/c I lived through how horrible I felt and it has also helped me be much more aware of what I am putting in to my body (which is very beneficial for a person with diabetes).

I really appreciate any input. This disease is very ambiguous and learning from people going through it or who have gone through it feels like a blessing when I all I want are answers that make sense.

[cindyt108]

I was shocked to be diagnosed with celiac disease. I had absolutely no GI symptoms, but rather nearly lost the ability to walk and was anemic. When the anemia didn't respond to iron supplements after 6 months, I was given an endoscopy and celiac was discovered then. I went to Beth Israel Hosp. in Boston and they told me that celiac disease caused the walking difficulties. I have been gluten-free for a year and a half and can walk 2 miles a day again!

[elye]

I was another silent celiac, and shocked by my diagnosis - - absolutely no symptoms other than low iron (but what middle-aged, menstruating woman isn't low in iron?). Now, however, I get all of the classic symptoms when accidentally glutened, plus, at times, the "non-classic" ones - - headache, fatigue....

It is truly amazing to contemplate this fascinating, ambiguous disease, and how many illnesses and symptoms are attributed to it.... . ..

[psusharon]

Well, it sounds like you have done a trial diet and have figured out that you react to gluten. I want to throw something out there for you though . . . you're planning to talk to your doctor but you are already gluten free. In order for your blood test to have a chance at being accurate, you need to be on gluten for awhile (amount of time recommended varies from 6 weeks to several months depending who you talk to). So I just wanted to ask . . . What do you want to accomplish with your doctor? . . . Just to let him know that you have come to this conclusion through a trial diet and challange . . . which perfectly acceptable and lets you know that you need to steer clear of gluten . . . or to get an official diagnosis? . . . because (unfortunately) most doctors are going to want to do blood testing (initially) in order to pursue a formal diagnosis. But like I've said, you don't need a formal diagnosis to eat gluten free if it makes you feel better.

You may be lucky and your doctor may be open to your trial diet/challenge as a means of an official diagnosis. Plus, you could also get the celiac gene test done.

I appreciate your reply. What I am looking for is a diagnosis b/c even though I can eat gluten free and that's a lifestyle change that makes me feel better and isn't that difficult, I want more. My mom seems to be a candidate for celiac, as was my grandmother (though she is no longer with us). Now I have a daughter. With a possible genetic link in the picture my ears are perked up and I want the best for my baby. If all of this hullaballoo is over nothing, then it's nothing. Pediatricians like to know about a family history of wheat sensitivities and I don't know what to say. I know a diagnosis is a lot to ask for with this disease, but with my baby in the picture now I am asking for a lot I guess.

[AliB]

If you are Diabetic why have you not been tested for it already? There is a definite link between Celiac and Diabetes and all who are diabetic, particularly type 1, should be tested as a matter of course as should at the very minimum fist-degree relatives of any diabetics.

The best way not to go to pieces in front of the doctor is to know your subject. Know what you are talking about and don't let him/her bully you. They have thousands of pieces of literature and information to plough through on every illness imaginable, and there is no way that they would ever be able to keep up with it all.

New information on illnesses like Celiac gets shelved in favour of information of the more 'common' illness and disease that walks in through their surgery doors, so it is not surprising that most, unless they are a 'specialist' in the Celiac field, will be in no way up-to-date with current information.

My doc is great - she openly admitted the other day that I know more about this than she does (not all would be humble enough to express that!) and when I used a quote by an eminent specialist. she asked for his name so that she could appraise herself of the information. I have enlightened her that Celiac is a huge problem - much bigger than most realise and that so many who walk through their doors are there because of Celiac.

Mine has not yet been diagnosed but she is working with me to try and resolve it one way or another. A biopsy is useless as I have been gluten-free too long and as the medical article I was telling her about pointed out, only a small proportion of Celiacs actually present with gut damage anyway. I refuse to go back on to gluten and be put through torture all over again.

Knowledge is power, the more knowledge you have, the more confident you will be. Learn to become an 'Expert Patient' and demand (nicely!) that you get the support you need.

PS. Whilst many 'Silent Celiacs' can appear to be quite healthy until 'felled' by a Celiac-related illness or something triggers the Celiac out of 'hiding', some often do have some health problems all the way through but they are not necessarily of a form that would be automatically linked to Celiac. Unless eagle-eyed and well-informed doctors are 'on the ball', those with 'silent' Celiac can suffer for years from vague unexplained health problems that would never send out any clues. As knowledge and understanding of the disease grows, then those with 'Silent' Celiac will be more likely to be picked up.