Does anyone have Celiac Disease?

[NikonMama]

I often get ulcers in my mouth, particularly if I don't use a specific type of toothpaste.  I have a ton of them in my mouth right now, so I was looking up reasons for them yesterday and I came across a LOT of interesting information. First, I learned that Celiac Disease can cause them. Then that lead me to find out that since I have Addison's Disease, that puts me at a higher risk of developing celiac disease. THEN, I found out that celiac disease can cause seizure disorders. A couple years ago, out of nowhere, I started having partial complex seizures, but nothing showed up on my EEGs, strobe tests, or anything that pointed toward epilepsy, and medication does not control them at all.

Now I am really worried that I have celiac disease.

The other symptoms I have are:

-Almost constant diarrhea (which is often fatty/greasy), but when it isn't it is constipation.
-Abdominal bloating. I'm a thin person, but my lower abdomen sticks out more than it really should, and I can't suck it in.  I look like I did when I was around 5 months pregnant with DS.
-Anemia
-Recently lost almost 20lbs, and made no change in my diet or lifestyle
-Dental enamel problems
-Osteopenia, diagnosed right as I was diagnosed with Addison's about 7-8 years ago (I'm currently 34y/o). Have not been tested since then so I'm not sure if it has progressed to Osteoporosis. It probably has, as I have been on corticosteroids since then. The Osteopenia was not attributed to that, b/c I hadn't been on it long enough at the time it was discovered.
-Joint pain and swelling
-Long term infertility (been TTC for 12 years) and multiple miscarriages
-Depression
-Mouth ulcers

-Almost constant terrible fatigue

What do you think? I'm really worried b/c everything I love to eat is on the prohibited list. *cry*  That should make it easy for testing, though. LOL

If you or your child has Celiac Disease, would you mind sharing your story with me?  How was your process of getting diagnosed? 

[tillymonster]

Oh dear! I am so sorry... you have many symptoms that sound like Celiacs. I'd start with a gluten free diet and go from there. If you can see a doc, get tested. But-- I've read a stool test is the only real way to know. Make sure you do any tests for this BEFORE you go gluten-free.

I have Hashimoto's thryroiditis. It's very common for the two (Celicas and Hashimoto's) to go hand in hand, so I've read a lot about this as well. I'd also suggest looking into a primal/paleo diet/lifestyle. It's helped me immensely!

[glutenfreewheel]

Hello,

Sounds very possible, though a simple blood test will confirm. Mouth ulcers are the pits - it's worth being diagnosed and going gluten free to get rid of those shockers alone.

I had some similar symptoms to you - check my story here: http://glutenfreewheeling.com/?page_id=554, though each case is individual, it's a baffling condition that should be tested for more.

Good luck!

[MaryK]

I'm so sorry you are having problems.  My mother had Addison's Disease but was never dianosed with Celiac Disease, but I know she had it.  She had tiny arms and legs and a large stomach that she couldn't suck in, it was hard as a rock.  She suffered so much with so many symptoms, migraine headaches, hallucinations and paranoia just to name a few.    

Both my sister and I have Celiac Disease.  I also have Type I Diabetes, Hashimotos Disease, Fibromyalgia and Gluten Ataxia.  I was diagnosed in 2004 when I had a severe Vitamin D defeciency.  I couldn't even touch my arms as it would feel like my bones would break. 

I was so tired for so many years I could hardly do anything. I have a blind spot in one eye from a stroke and so did my mother.  My sister also had a stroke in her eye and if left her vision dim, like she's in a lamp lit room.  My sister also had such bad migraine headaches the pain would throw her to the floor.  She hasn't had one since she went gluten free.  I also have mouth ulcers when I accidently eat gluten.  I never knowingly eat it.  A crumb of cross contamination will make an ulcer. 

Please go get checked, do not quit eating gluten until you do.  The gluten free diet is not as hard as it used to be, just be careful of cross contamination when eating out.  Be prepared for the "deer in the headlights" look when you are explaining to the wait staff how you need to eat.  Be firm and most of the time it works out o.k. 

If you have Celiac Disease the longer you wait until you get a diagnosis the more chance that you could get more autoimune diseases.  Celiac is a very bad disease!!!

I wish you the best of luck and hope that you will be feeling better very soon!!

[NikonMama]

My stomach is hard as a rock a lot of times also, and on those days I really do look pregnant.  Now I'm starting to wonder if it gets that way b/c I had a high gluten intake day or something? 

[fruitfulmomma]

We were never tested so I am not sure if our gluten intolerance is celiac or not but we've been gf for 4 years and it is not as hard as it seems at first. There have been lots of great new products put out since we started and they taste good.

[RiversOfHoney]

I have Celiac too.

First I'm going to second MaryK's advice about testing: do NOT go on the GF diet until after you've been tested. You must be consuming gluten in order to test accurately--if you do have Celiac but you're not eating gluten then the antibodies won't be present and you'll get a false negative. My input it to have the blood test, and if it comes back positive they'll probably recommend an endoscopy with biopies. That's up to you. False positives are rare so if you tested positive on bloods you can pretty much count on having it (regardless of what most doctors would say to try to get you to pay more for more tests). But many people like to do the endo to check the extent of intestinal damage. Like I said, it's up to you and you'd probably want to consider costs, too. If you test negative, then you might as well give the diet a try to see if it helps. If it does, trust your body and don't eat gluten anymore.

As Mary said, the diet is not as hard as it sounds, especially if you already are in the habit of eating plenty of fruits, vegetables and proteins rather than mostly breads, etc. Before I was diagnosed I lost 20% of my body weight and had gotten to the point where I couldn't keep any food down. I'd had a constant yeast infection for several years (yes, really) and the mouth ulcers. Obviously no energy when I was that ill. I improved within a few weeks of going on the diet and within a year I'd returned to a healthy weight and gotten most of my lost strength back. Happy to never be eating gluten again (and being careful at restaurants and friends' houses)!

Kudos to you for starting to put some pieces together and trying to get to the bottom of how you've been feeling.

[Shaunamom]

Just based on symptoms, oh yeah, you would be a good candidate for Celiac Testing.

Myself and both my children have trouble with gluten, along with my father AND my brother.  If you are diagnosed with this, you should know that experts recommend that your parents, siblings and children get tested as well. It is also recommended that if they test negative, they get retested every 2-5 years, as this disease can trigger at any time.  Even more distant relatives may benefit from testing - they will be in a higher risk category, if you are positive.

I very much wished a doctor had mentioned this fact to my family. My father was diagnosed 8 years before I was. We never knew we should test the rest of the family, so we didn't. I happened to ask for the test myself during an endoscopy for a completely different issue. I'd heard that this was a way to test for Celiac Disease and thought, what the heck, might as well ask, since I know it's in the family. That was how I got diagnosed. I then asked for my children to be tested. My daughter came back positive, my son didn't. But when we all went gluten free, suddenly physical issues of his went away, so he now eats GF too. I consider him intolerant. Of the many Celiacs I know, many seem to have that pattern, with some children positive and some not, but a higher percentage of gluten intolerant children, too. My brother got tested once everyone was coming back positive and HE has it too.

I was sick for over 20 years, with vertigo, sleep issues, fatigue, memory trouble, joint and soft tissue problems, skin trouble, constant illness and injury (body couldn't keep up with healing), depression and anger issues, extremely low frustration tolerance.  My son and daughter have probably been sick since they were less than a year old. :-(  They both had bloating that we thought was just chubbiness (one in the face, one in the belly), pale skin, dark circles under their eyes, and both of them have always been very fragile emotionally, lots of anxiety, lots of sleep problems. My son had huge issues with mouth ulcers. All three of us have trouble with our teeth.

Off of gluten, sleep issues, depression, anxiety, bloating, mouth ulcers, almost all of the physical and mental problems were gone after going GF, for all of us. We ended up discovering that we have a few other food issues, so we need to avoid those as well. That took care of almost everything else. The part that I've had to learn to cope with is how much we lost for going undiagnosed this long. I have a complication that stems from from a disease that you don't get unless you are immuno-compromised. My daughter looks like she may have developed another auto-immune disease due to damage from Celiac Disease, and her teeth are permanently problematic. I have permanent damage to my spine, hands and feet. My son's teeth may be permanently problematic, too.

I would SO recommend getting tested - the longer you wait, the more problems it can cause. :-(

Re: the diet. It IS hard to lose those foods. Be prepared to let yourself mourn the loss; I think that's normal. But I will tell you truly, you cannot IMAGINE how much better you feel, if Celiac Disease is an issue for you. I lost gluten, and then lost dairy, soy, eggs, and sugar, too. And I react to sulfites so severely I even have to buy special salt to make sure it's not bleached. I lost all my favorite foods, almost all my foods I ever made, really. In the first few weeks I cried a heck of a lot, unable to even figuring out what the heck I was going to eat, you know?

But once I started to heal, and avoided all these foods, it all changed. After just a few weeks, I felt happier than I've felt in decades. It's like a heavy, dark blanket that was smothering me was suddenly gone and the whole world looked brighter, and everything was easier to do, even the crazy new diet. Again, it took 2-4 weeks before my body healed enough to start absorbing nutrients and the inflammation subsided and such. But once that happened - it's worth it. I haven't been tempted to cheat on the diet even once. I NEVER want to feel that bad again.

I almost hope that you find that you have this as well, because in many ways it is an easy way to suddenly feel much better. Just food. No drugs, no side effects, nothing that is outside of your control. As solutions go, that's a pretty good one, IMO. :-)

[scsigrl]

Originally Posted by tillymonster 

Oh dear! I am so sorry... you have many symptoms that sound like Celiacs. I'd start with a gluten free diet and go from there. If you can see a doc, get tested. But-- I've read a stool test is the only real way to know. 

A stool test is NOT the way to be tested for Celiac.  First is blood work. There are several tests that make up a panel for Celiac. If those are positive, most Dr's will want you to do a biopsy. 

 

As stated, DO NOT GO OFF GLUTEN until you get the blood work and biopsy if you have + blood work. Any testing will be useless if you go off gluten. 

 

[mamaupupup]

I have Celiac and both my kids have Celiac!   We all were diagnosed this year.

I echo:  keep eating gluten until you have a firm diagnosis!

My greatest advice:  find a GREAT doctor.  Since you're in MO, it is likely worth it to travel to Chicago -- they have an AMAZING Celiac center there.  We travel for our Celiac care (a lot in the diagnosis timeframe, once or twice a year thereafter).

My greatest piece of hope for you:  after testing and clearing out gluten, you will likely feel a LOT better :) it's so worth it!  And, you will likely live a longer, healthier life.

Our greatest hurdles:  finding gluten free cat treats and the fact that two out of three of us had negative serology (the bloodwork for Celiac).

My overview on what to consider when determining whether or not you have Celiac is below.  Note that I personally (and some GIs) consider a combo of some of these when diagnosing:

- Positive serology

- Positive genetics

- Symptomatic on gluten

- Positive biopsy

- Symptoms relieved off gluten (post testing!)

- 1st or 2nd degree relative diagnosed Celiac

- Positive for related diseases/conditions

Also, there are excellent forums on celiac.com which may help you and excellent reference material on celiac.org