This Answers So Much!

[Nantzie]

I don't even know where to start. So many of my digestive problems seem to match celiac. I had heard of celiac before, but had heard celiacs are people who can't tolerate gluten. I've never had a problem digesting gluten, so I figured it wasn't me. But it's not that celiacs have a hard time digesting gluten, it's that the gluten destroys the lining of the intestines, making it hard to digest just about anything. Different people have different symptoms and different food categories that give them their worst symptoms. Am I getting this right?

I came across celiac after trying to find an answer to my chronic, horrible gas problem. I've got friends with IBS who have a lot of my other symptoms, but none of them have the constant passing gas. Doing research into it, I found out that the really bad gas is protein and fat malabsorption. I knew there had to be a reason for it, so I went the candida route, and although it helped most of my symptoms, they came back, and worse. So I knew I was dealing with something else too.

So here I am. I just found out about the symptoms of celiac yesterday. I know there are hundreds, but here are my symptoms that match what I've seen so far about celiac. --

Gas

bloating

abdominal distention

food cravings

back pain

diarrhea (very urgent)

occasional constipation

fatigue

dry skin

tooth enamel defects

weakness

weight problems

depression

poor concentration

poor memory

I came across a symptom description that said - back pain (such as a result of collapsed lumbar vertebrae) - Well, I was diagnosed with lumbar scoliosis after my son was born a year and a half ago. I've got an S-curve. I'm wondering if the cause of the scoliosis is collapsing of the vertebrae. I haven't been able to go in for xrays or anything because it's been a really bad year for me. My dad actually died of stomach cancer a few months ago, so his illness and death made me put my problems on the back burner. My dad had stomach problems and a lot of the symptoms of celiac too. I'm actually wondering if that was what caused his cancer because that's what I've read in the celiac symptoms and complications.

I'm about 30 pounds overweight right now, but I've had several times in my adult life where I've lost 25 pounds in the matter of a few weeks with no change in diet, exercise or appetite. There have also been a few times where I've gained that much weight that quickly for no reason. It's also become very difficult for me to lose weight, which makes the whole your body using weight gain to protect itself from starvation thing make so much sense to me. I did a metabolism test once and my resting metabolism was 1100 calories a day. A starvation diet is 1200 calories a day, so even if I did a 1200 calorie diet, I would still actually gain weight.

I also saw a post on this board about mono and celiac. It was said that sometimes mono triggers symptoms to start happening because mono weakens your immune system. I had mono when I was 18. Even though it's been 16 years (gasp, choke) since then, I really feel like I've never recovered. I'm always exhausted. Now that I look back, it was around that same time that I started having digestive problems.

I also saw that short stature can be a symptom. It seems like they were talking about very short stature, but I'm actually pretty short for my family. I'm 5'8", which is tall for a woman, but I come from a long line of tall women. My mom, and most of my female relatives were 6 feet tall, or very close to it. So for my family, I'm pretty short.

I emailed someone at my local celiac support group to get a recommendation for a doctor in my area, so I can find out if I have it or not.

Geez, I feel like I've told my life story here. Well, anyway... Hi! I'm really glad I came across this board. You all have been so helpful just by being here.

Nancy

[Carriefaith]

Welcome,

Your symptoms and your history sound a lot like celiac. If you want an official diagnosis, make sure that you don't start the gluten free diet until after all the medical tests or else you could get false negative results. I reccomend getting the tissue transglutamase blood test along with the other blood tests for celiac.

[nettiebeads]

Hi Nancy!I think your suspicions are right about celiac. Especially when going over your history (we don't mind, everything is read and discussed here, some threads are positively poopy ) when you suspected mono was the start of your health problems. My celiac started during a stressful time in my life and I had a very severe sinus infection. Infections seem to be a trigger in developing celiac disease, if one has the right genes. Or wrong ones, depending on your viewpoint. Is your D(iarrhea) pale, frothy and really really gross smelling? That's from the malabsorption of fat and a very common symptom of celiac disease. A host of other health problems come from the malabsorption cause by celiac. That's why you need to be tested as soon as possible while still ingesting wheat and then you can get on the gluten-free diet. Ask any questions you want, none are silly or too far out, especially where your health is concerned.

[nettiebeads]

Sorry, I forgot to add this to my post. It's something I found that explains

things in easy to understand language. I don't know why the hyperlink doesn't work tho. It is from the NIH, so it is very reputable.

Open Original Shared Link

[Nantzie]

Thanks for your replies. I definitely won't try to go no-gluten until I find out if I actually have it. I am so good at keeping my digestion supported with supplements, digestive enzymes and probiotics, etc., that I haven't had too much of a problem with my stools lately. But as soon as I go off the supplements, my stools are messed up within a matter of a couple of days. I'm not sure what you mean by foamy stools, but I do get stools that are obviously full of gas; kind of broken up with bubble looking formations. And gross smelling? Oh. My. Gosh! I can hardly believe it sometimes. I also get diarrhea so urgent that I have to run and practically push my poor kids out of the way to get to the bathroom that is less than 10 feet away. When I find a doctor and get an appointment, I'm going to go off all supplements, etc. so I can give an accurate report of my symptoms and get accurate results. I'm SO not looking forward to that. It's a good thing Safeway delivers groceries in my area, because there is NO way I'm going to be able to go out in public with my gas problem.

I've been reading a lot on the boards, and the fact that a LOT of restaurants actually know about this and are happy to accommodate and even have special menus just about has me in tears. My stepmom is severely hypoglycemic (she almost died from it), and at first when she tried to go out and explain this, they would look at her like she was nuts. They also assume that she's just an Atkins dieter and is being overly picky. To know that you could start halfway talking to the waiter about celiac, then he knows exactly what you're talking about AND whips out a specially printed menu with actual CHOICES on it is absolutely amazing to me.

Nancy

[nettiebeads]

How soon do you think you will be able to be tested? I'm afraid that by dealing with just the symptoms you may be doing serious, even irreversable damage to your small intestine. Please do find a dr very soon - the sooner you start the gluten-free diet, if indeed you have celiac disease, the sooner the healing can start.

[Nantzie]

I'm going to get tested as soon as I find a GI who tests for it. I've got a PPO, so I won't have to go through a general practitioner to ask for a referral. I can just make an appt directly and go. I was waiting to find out a name from the local celiac support group, but they emailed and weren't able to help me. They said that the MD that they really recommended had retired.

I think I'll just call around this week and ask the appointment desks if the doctor treats celiac. If she has no clue what I'm talking about, I'm going to have to assume it doesn't come up much in the office and the doctor isn't well-informed about it. I'm hoping to find a doctor sometime early this week, and hopefully I can get an appt in the matter of a few weeks, rather than a few months.

I figure if I can find a doctor who is even just open-minded about the possibility of celiac disease, even if it isn't celiac disease, he will be open-minded about helping me figure out what it is that is causing the fat malabsorption and help me deal with the passing gas problem.

As soon as I know when my appt is, I'll decide when to stop taking all of my supplements. I actually did stop taking most of them after reading your post and am just taking digestive enzymes. If I've got a couple of months to wait before I can see him, I'll keep taking the enzymes for a while and then stop about a month beforehand so my body can be it's version of normal (as in gassy, bloated, fatigued, etc.) before I go in for tests.

I'm sorry I've been so emotional in these posts. This is just constantly passing gas is such an embarrassing problem and knowing I'm on the road to SOME kind of information is such a relief.

Up until finding out about celiac disease, the only information I was able to find was that everybody passes gas 10-15 times a day and some people are just more embarrased by it. But, if everybody were to pass my kind of horrible gas that much every day, everybody would be walking around with cans of air-freshener. Just kidding...

I've also found on these boards that some people had symptoms of hypoglycemia and fibromyalgia before finding out they had celiac disease. My stepmom has both. Now I'm realizing that SHE needs to get tested for celiac too. With her hypoglycemic reactions, if she gets ANY wheat at all, it's the worst reaction for her. Even worse than sugar sometimes. If anything, now that I know about the gluten free menus and the restaurant cards, she can at least use that as a starting point when we eat out. And I have another friend who has been diagnosed with IBS and fibromyalgia that this would make sense for too.

Thanks for all your help.

Nancy

[julie5914]

Hey Nancy,

As the others said, it sounds very much like Celiac. I hope you can get the blood test soon. The Gluten Free diet will make that stuff so much better if gluten is your problem. I had your problem on and off when I on gluten. It was extremely embarassing. It would often happen to me at the gym in the morning before I had even eaten anything! I had trouble digesting meat specifically, which is finally getting better. I apparently had no toruble absorbing fat though! I gained weight. I actually may have gotten very good at storing it because when the weight gain happened I was running a lot and trying to lose weight. My body had a very clear freak out. I also think got it from Mono at 19 years old. Good luck and stay strong. The waiting is the hardest part.

[Nantzie]

Well, I've got a doctor's appointment on Oct 4th. I ended up making it with an internal medicine doctor. One of the health systems in my area has a webpage where the doctors write an introduction of themselves and what their professional interests are. I really liked what this doctor had to say. She said that she like the detective work aspect of being an internist; investigating symptoms, etc. That sounded good to me, because if this isn't celiac, I want a doctor who will be willing to do some detective work and help me figure out what it is. I decided to go to a general practitioner because I've been needing to find one anyway. If she won't order the blood work, I can still go to a GI doctor anyway.

I did talk to my stepmom about the celiac disease, and she said that she's never been the same since she had surgery when she was in her early 20s, and so much makes sense. Her intolerance to wheat is so bad that she can't even touch it. She said that she was making someone a sandwich the other day and she put gloves on to do it. She said that she kind of thought it was weird that she even had the thought to do it. But it makes so much sense now.

She's going to Europe this month (won a trip), so I ordered her some restaurant cards for her to take with her.

Nancy

[floridanative]

Hi Nancy,

Where did you order the restaurant cards? I haven't heard/read anything about them. I will need them too if my tests come back positive for celiac disease.

Best of luck to you with your diagnosis.

Tiffany M.