Do I Have Celiac Disease?

[Savanna]

I am currently a senior in high and have had several medical problems over the years. It started with chronic recurring headaches and migraines that have no explanation and that even neurologists cannot find any reason behind. it's been nothing but problems added since then.

*As I said, headaches and migraines with no explanation or reasoning. I've even had an MRI of my head and cervical spine which came back perfect
*Unexplained iron deficiency that keeps getting worse despite being on iron supplements
*Nausea and pain anytime I eat
*I get full incredibly fast but then get hungry within an hour or two
*Shortly after I eat, it doesn't feel like I've eaten at all
*When I blow my nose, there is almost always blood
*No matter how much water I drink, I show signs of dehydration
*I am ALWAYS tired. Most days I probably sleep more than I'm awake
*I have incredibly dry skin on my face
*I have almost constant abdominal pain
*My joints get incredibly stiff
*I get short of breath very easily
* Despite the fact that I'm not eating much and I have a Sports and Games class, no matter what I do, the excess weight on my body won't drop and stay gone. My weight does fluctuate horribly though. I may lose a pound or gain a pound in one day. The weirdest part about it is that, unlike how I used to gain weight, it's all going to my abdomen.
*I frequently break out in hives and another similar rash
*My brain constantly feels foggy and I'm constantly having a hard time remembering things
*I just cannot focus
*I get horrible muscle spasms
*I have a random rapid heart rate even when I'm just sitting down in class doing nothing
*My hands and feet fall asleep very easily
*I get tingling in my hands and feet
*I get a sore throat all the time and have been tested for Strep and Mono. Both came back negative.
* My mouth is almost always really dry
*I get sharp chest pains
*All along my arms, my chest, my hands, and my back, as well as a small amount on my legs, I have a huge number a small, normal sized scabs. they are all very small but my arms are normally covered so I have no clue what's causing them. I counted just the scabs on my arms one day and counted 71.
*My vision will at times get blurry for a minute or two and then return to normal

I have been through several tests over the past several months. I've had an MRI, an ultrasound (checking for blood clots), an EMG, I've been checked for mono, lyme disease, MS, cancer, a brain tumor, nerve damage, strep, inflammation, and kidney problems/failure, among various other blood tests... Everything has come up negative, but Celiac is genetic and it does run in my family, so I'm wondering if I have it?.....

[Jonah]

Have you been tested specifically for celiac?

I very much doubt that all of your symptoms are caused by celiac, but everybody with an immediate family member should probably have periodic screening for celiac.

It might be worth seeing what happens if you go gluten free, but if you go gluten free, the testing for celiac will not be accurate.

[Charles]

You have all these problems,and you are to dumb, to go see a DR ?????????

[shauna]

I know of a couple disorders that may be the answer - almost every single one of your symptoms are present with these disorders. Although I would definitely stay on gluten and get tested for celiac disease, because you could have a combination.

The first is Mastocytosis. This is a major society that researches it: http://www.tmsforacure.org/welcome.php

The second is a related disorder called a 'mast cell activation disorder (MCAD)'. There is nearly NOTHING on this on the web except for a few support groups, and the ones on Facebook are the main ones I know of to get good information on. If you get on face book and search for mast cell disorder, MCAD, or mastocytosis, you should find most of them.

Both of these are rare disorders, although the prevalence of celiacs within the population who have these disorders is higher than average. Both of these are so rare that people with it usually have a packet they take with them to the ER, to tell doctors what the disorders ARE and how to deal with them. So not being diagnosed for this is not a surprise, if you have it.

Here's what it is:
In regular people, they are exposed to an allergen, it triggers their IgE to elevate, and that triggers their mast cells to release histamines. For a person with MCAD or mastocytosis, their mast cells trigger WITHOUT elevated IgE. The symptoms vary depending on WHICH mast cells trigger (they are everywhere in the body), whether they dump their contents all at once or leak it, and which of their contents they leak (there are at least 60 different substances in mast cells).

But one of the real challenges is that people with this are typically having allergic reactions - or what amounts to them - but they will test NEGATIVE on an allergy test (which looks for elevated IgE). They also frequently have atypical reactions, so they will have some symptoms without other symptoms one would expect.

So, symptoms -
- headaches and migraines - very common allergic reaction. Nothing shows up on tests, usually.
- Tons of gut pain and problems, sometimes every time you eat, are common. Nausea, pain, diarrhea, constipation, and so on. First, the gut can react during an allergic reaction. Second, the body utilizes histamines for every day things, like preparing the body for consuming food by triggering it to secrete gastric juices, etc… The mast cells have to release some of their contents, histamine, to do this. But for a person with mast cell disorders, their mast cells release so much usually that they already have too much histamine in their body so that little bit extra pushes it over the edge and they have a small allergic reaction. Every time they eat, until they can get treatment.
- many mast cell folks have many foods that end up causing them trouble.
- mast cells can release heparin, too, which is a blood thinner. Some of us have bleeding problems as a result, such as at mucus membranes.
- during an allergic reaction, the cells release some of their fluid into the body. This is into parts of the body that you cannot USE the fluid from. So many of us are partially dehydrated quite a lot.
- exhaustion and fatigue are very common.
- skin is often very affected. Mastocytosis involves spots that sound similar to the scabs you describe. I don't know if MCAD folks have this or not, but it's worth checking. Although celiac disease can sometimes cause a blistering rash known as dermatitis herpetiformis, so that's worth exploring, too.
- joint, bone, and muscle aches, spasms, pain, and stiffness are very common.
- breathing can be affected as part of the allergic reaction, but like I said above, it can be atypical. So one can feel short of breath, but the throat stays open, so it doesn't feel like it's hard to breathe because you are having an allergic reaction, even if you are. Also, histamine is used during exercise, so many of us have a hard time with exercise
- weight can be high or low, no standard.
- typical allergic reactions are common, too, like rashes and hives.
- brain fog, concentration issues, and memory problems are REALLY common. For many of us, it's constant until we can get treatment.
- elevated heart rate is really common, and can be a sign of an allergic reaction.
- hands and feet falling asleep and elevated heart rate, however, can be indicative of something called dysautonomia, which is another rare condition and many more people with mast cells issues turn out to have this too, to a certain extent. But it can also simply be part of MCAD or masto.
- a sore throat is REALLY common for a lot of us, and is actually usually a reaction in our throats due to allergies. The dry mouth can be too. Although dry skin and mouth can ALSO be a sign of something called Sjogren's syndrome. That has a higher correlation with celiac disease, so again, might be worth getting tested for that, too.
- heart problems and vision problems can also be caused by mast cell issues.



Like I said - you have a LOT of the symptoms for this, and with the hives especially, if you are not testing positive for allergies (I'm assuming you HAVE been tested for allergies, what with the hives? If not, I'd do THAT first, because a lot of this could simply be allergic reactions, too!) then a mast cell disorder is worth exploring.

But I would check this out on the web, first. The Mastocytosis society can give you the names of doctors who can test for this - many not only don't know how to test, they don't know how to READ the tests, so it can be very tricky to get diagnosed.


Wishing you well, and I hope you find the answers soon.

[Patricia]

Hi Savanna. I'm really sorry you are having all of these problems. At your age you should be enjoying your life, not worrying about health issues.

Much of what you describe can be caused by Celiac disease and the fact that it runs in your family is a good indicator that this could be your problem. I'm actually quite surprised your doctor hasn't tested for this given your family history. I'm much older than you and over the course of my lifetime have had most of the symptoms you describe...but not all at once.

Keep in mind though that false negatives on the Celiac test are very common, so even if the test comes back negative you may still have it. I would suggest asking your doctor for the test. You do need to have gluten in your system for the test to work. That's why some people just choose to go gluten free without the testing. They are in so much discomfort that they don't want to wait. Regardless, if you do get the test, try going gluten free afterward, regardless of the result of the test.

What you describe definitely sounds auto-immune. Diabetes can cause circulation and vision issues as well as issues with hydration. Also diabetics don't heal well so if you get cuts or sores it may take longer than normal for them to heal.

All the best Savanna. I hope you get this resolved soon so you can get in with being a young woman!