Would You Request Testing If You Were Me?

[Tina76]

Hello everyone! I have the following symptoms, of which some I've had all my life, but some started with my second pregnancy:

- bloating. ALWAYS

- retaining water. ALWAYS

- stomach aches - sometimes but this feels more like ulcers to me

- gallbladder attacks every now and then, not sure if that's related

- headaches. not really strong but more like a constant dull headache

- itchy skin (but no rash, feels like something is crawling on me). started during pregnancy and never went away

- joint pains and swelling, at times severe. started right after pregnancy

- either constipated or going 10x a day (no diarrhea though). no happy medium

- lately I also feel lightheaded, and my mind feels foggy, to the point where I started to worry about my sanity, it was scary! but this too seems to get better instantly when i get back on track with my eating again

As far as the bloating and water retention, I've had that long as I can remember, but I always thought it's from sodium (I love my salty food). But when my aunt stayed with me for two weeks and made her Austrian food which is all dumplings, gravies, and basically everything starts with flour and butter, I felt like I was 20 lbs heavier and completely miserable by the time she left and the joint pains were unbearable, and I started suspecting it was the food but couldn't pinpoint it. I still thought it was the salt but eating less salt or even no salt never seemed to fix the problem. So I tried to cut out all carbs and felt like a new person. The joint pains did not go away completely but at least got better. Then I had skin testing done, thinking that a wheat allergy would also show gluten sensitivity, and when it didn't show that, I started eating everything again and started bloating up again. Now, to me it seems pretty clear that gluten makes me feel sick, but when I told the allergist about my symptoms he said he can run the celiac panel but he sounded sarcastic, as if to say "another one who thinks she has this" and said he is sure I dont have celiac disease because I don't have the stomach aches and diarrhea.

Well, the thing is that I was positive for just about everything NON food related they tested. I am allergic to almost every grass and tree and every weed they tested. And yet, although he said I am "significantly" allergic, I don't have the classic symptoms there either. I don't sneeze, have no runny nose or itchy eyes. So it would make sense to me that I don't show the "classic" signs of Celiac either.

I'm almost hoping I have this...I know it sounds crazy but I feel 80 yrs old due to the joint pain and would love to find the true source. Am i crazy to suspect gluten? Yes I do always feel better when I cut it out, but then again I would probably feel better on any diet that cuts out the junk so I'm never sure...

Does anyone here have similar symptoms and no stomach pains or diarrhea?

Thanks so much for any input!!!

Tina

[anna34]

Wow. Your story sounds identical to mind except I never had gallbladder problems. Even the fact that I developed more symptoms following my second pregnancy. Everything is the same.

Whenever a new symptom developed I would say to myself "Oh, well, I'm pregnant. I just had a baby. I'm getting older. I'm a working mom. I have stress. This is just how I am." I let it go for too long and my body just shut down and nothing was making me feel better.

Let me tell you, if you do have celiac or gluten sensitivity - it does not have to be this way! I only found out about celiac when my 5 year old (who presented with "classic" celiac symptoms) was diagnosed through a G.I. and then our whole family had to be tested. And what a blessing it has been for me!

Here are the improvements I've seen in just 2 months on the diet:

- no more constipation or bloating

- I feel clear-headed for the first time in my adult life.

- joint pain is gone

- headaches are gone (This is huge. They were never bad headaches, but always a dull ache. I was constantly taking Tylenol and blaming it on lack of sleep.)

- skin is softer

- dark circles/eyelids are lightening

- dentist says my gums are at least 10 times better since 3 months ago (inflammation gone)

- my mood is positive

- I have enough energy to exercise.

On top of all of this, I'm eating a fresher, healthier diet. The guilt of eating fast food and eating pre-packaged foods is gone.

Is it worth being tested? Absolutely!

[ravenwoodglass]

Well IMHO if you are going 10X a day you have D it just isn't watery. Some celiacs alternate between having C and then D. A lot of your other symptoms also suggest celiac or gluten intolerance and the fact that this started after having a baby is significant because for women it is not uncommon for childbirth to be a trigger.

I also had allergy testing and showed up allergic to 98 out of 99 evironmental things they tested me for with skin prick testing. All but three of those allergies resolved after I had been gluten free for a while. My allergist later said that my sysytem was in 'hyperdrive' due to the celiac and this was one of the things that lead him to do an elimination diet with me which lead to my diagnosis.

Do be aware that the panels can have false negative results but do get one done if you can before you go gluten free. If it is positive then you know for sure that you need the diet. Most doctors will want to do an endoscopic biopsy to check your small intestine. It is up to you whether you want to have that done or not.

After you are done with all testing you choose to do then do go strictly gluten free no matter what the results.

[anna34]

Ooooh...I hope that my seasonal allergies go away one day! Life without ragweed and hayfever PLUS all of the other perks of figuring out this celiac thing would be sweet!

[Tina76]

Wow I am amazed at how many things I seem to have that I see others on this board have! I have been tired ever since my 2nd pregnancy too. Tired in a way that had me concerned, but I always contributed it to having a demanding toddler or the lack of exercise. My muscles, especially my leg muscles are so much weaker than I remember them being, I have always been a very muscular girl, and I contributed that to the partial bedrest I was on while pregnant. I have been irritable to the point where I considered antidepressants, yet I never felt depressed, just very "on edge". I even saw my doctor just a few weeks ago and cried my eyes out, telling him I just felt so off and that I honestly thought I was losing my mind. I work appeals for an insurance company and I'd find myself reading the same letter over and over again and checking it several times because I felt like I wasn't able to read my own words...I mean I was reading them, but I couldn't comprehend them. It was really scary and I thought ok I must have MS, or Parkinsons, or Lupus, or some other debilitating disease. Another strange thing I had was that I felt like I coulnd't use my muscles in a controlled way. I was by no means twitching all over the place...but I felt like I could only move too fast or move too slow. It was not noticeable to anyone else...but it was again something that I thought was just because I was tired. I have been contributing every single one of my symptoms to tiredness or stress, when deep down I knew that I wasn't really THAT stressed out to cause all these issues. What REALLY freaked me out was when I suddenly felt like my facial muscles were getting weak, that's really the only way I can describe it (thats when I thought I had MS for sure). It affected my lower lip down to my chin and while it wasn't numb or paralyzed, I felt like it was "heavier" than normal and it threw off my speech and I found myself not even wanting to talk because it was such a strange feeling to use my muscles, like they didn't quite want to respond. "Luckily" my joint pain was also at its worst at that point and I thought I would give the no gluten another try. I wasn't even focusing on my issue with my jaw muscles or my muscles in general, I was only focused on my joints and checked everyday if they were feeling better or worse...when a few days into this diet I suddenly realized that I hadn't had any trouble using my lower lip to speak anymore. I had completely forgotten about it because I wasn't constantly reminded of it as soon as I tried to say soemthing. Unfortunately I was "forced" to start gluten again because I had company one week into my diet and I had promised them lasagna, and couldn't think of a way to explain why I could eat neither the lasagna nor the bread, and I didn't want it to turn into a big discussion, so I figured well I was only one week into it...

and slowly I felt the joint pains worsening and the lip thing coming back. I was also getting dizzy again. Not as much as before, but it felt like it was all SLOWLY coming back again. Definitely not a sudden, severe reaction right after I ate that lasagna. But once I kept eating the gluten again, it was more over the course of many days that I just felt like I was creeping up to that "at my worst" point again. I am now day 1 into my gluten-free diet again and not sure what to do...I don't know if I should try this for a few weeks first to see how I do to be "more convinced" that I figured out what's wrong with me, or if I should just keep eating gluten and get tested first. Sounds like I should get tested though from everything I read here! I definitely don't want this to get any worse than it is already...

[anna34]

Wow I am amazed at how many things I seem to have that I see others on this board have! I have been tired ever since my 2nd pregnancy too. Tired in a way that had me concerned, but I always contributed it to having a demanding toddler or the lack of exercise. My muscles, especially my leg muscles are so much weaker than I remember them being, I have always been a very muscular girl, and I contributed that to the partial bedrest I was on while pregnant. I have been irritable to the point where I considered antidepressants, yet I never felt depressed, just very "on edge". I even saw my doctor just a few weeks ago and cried my eyes out, telling him I just felt so off and that I honestly thought I was losing my mind. I work appeals for an insurance company and I'd find myself reading the same letter over and over again and checking it several times because I felt like I wasn't able to read my own words...I mean I was reading them, but I couldn't comprehend them. It was really scary and I thought ok I must have MS, or Parkinsons, or Lupus, or some other debilitating disease. Another strange thing I had was that I felt like I coulnd't use my muscles in a controlled way. I was by no means twitching all over the place...but I felt like I could only move too fast or move too slow. It was not noticeable to anyone else...but it was again something that I thought was just because I was tired. I have been contributing every single one of my symptoms to tiredness or stress, when deep down I knew that I wasn't really THAT stressed out to cause all these issues. What REALLY freaked me out was when I suddenly felt like my facial muscles were getting weak, that's really the only way I can describe it (thats when I thought I had MS for sure). It affected my lower lip down to my chin and while it wasn't numb or paralyzed, I felt like it was "heavier" than normal and it threw off my speech and I found myself not even wanting to talk because it was such a strange feeling to use my muscles, like they didn't quite want to respond. "Luckily" my joint pain was also at its worst at that point and I thought I would give the no gluten another try. I wasn't even focusing on my issue with my jaw muscles or my muscles in general, I was only focused on my joints and checked everyday if they were feeling better or worse...when a few days into this diet I suddenly realized that I hadn't had any trouble using my lower lip to speak anymore. I had completely forgotten about it because I wasn't constantly reminded of it as soon as I tried to say soemthing. Unfortunately I was "forced" to start gluten again because I had company one week into my diet and I had promised them lasagna, and couldn't think of a way to explain why I could eat neither the lasagna nor the bread, and I didn't want it to turn into a big discussion, so I figured well I was only one week into it...

and slowly I felt the joint pains worsening and the lip thing coming back. I was also getting dizzy again. Not as much as before, but it felt like it was all SLOWLY coming back again. Definitely not a sudden, severe reaction right after I ate that lasagna. But once I kept eating the gluten again, it was more over the course of many days that I just felt like I was creeping up to that "at my worst" point again. I am now day 1 into my gluten-free diet again and not sure what to do...I don't know if I should try this for a few weeks first to see how I do to be "more convinced" that I figured out what's wrong with me, or if I should just keep eating gluten and get tested first. Sounds like I should get tested though from everything I read here! I definitely don't want this to get any worse than it is already...

I still can't believe how similar our stories are. I also felt "on edge" and irritable all the time. I also had problems with my face. For me it was a slight stutter that developed. It was as though I couldn't get my mouth to move properly when I wanted it to. Most of the time I felt like I was about to drop to the floor, but I blamed it on stress and the fatigue of having young kids. After my second child was born, my hands didn't work properly for over four months. They ached all the time. So did my knees and feet. I was told it was just my hormones after pregnancy. I had to read and re-read everything because I couldn't focus. I remember wondering if I had developed adult ADHD or had some other problem. Again, I blamed it on lack of sleep and stress. At its worst, I couldn't read at all because the words began flying off the page.

I tried the diet and began to feel better within a couple of days. I felt so good that I decided to never eat gluten again. Looking back, I sometimes wish I had done further testing - just to have it on paper. But really, that doesn't matter now. I feel great.

If you decide to get the testing done, know that you can start the diet as soon as your testing is finished. You've found a wonderful source of information on this board! Welcome!

[Tina76]

I still can't believe how similar our stories are. I also felt "on edge" and irritable all the time. I also had problems with my face. For me it was a slight stutter that developed. It was as though I couldn't get my mouth to move properly when I wanted it to. Most of the time I felt like I was about to drop to the floor, but I blamed it on stress and the fatigue of having young kids. After my second child was born, my hands didn't work properly for over four months. They ached all the time. So did my knees and feet. I was told it was just my hormones after pregnancy. I had to read and re-read everything because I couldn't focus. I remember wondering if I had developed adult ADHD or had some other problem. Again, I blamed it on lack of sleep and stress. At its worst, I couldn't read at all because the words began flying off the page.

I tried the diet and began to feel better within a couple of days. I felt so good that I decided to never eat gluten again. Looking back, I sometimes wish I had done further testing - just to have it on paper. But really, that doesn't matter now. I feel great.

If you decide to get the testing done, know that you can start the diet as soon as your testing is finished. You've found a wonderful source of information on this board! Welcome!

Gosh, Anna that's exactly what I had too! That's a good way to describe it, a slight stutter. I even asked my husband if he noticed that some words didn't want to come out right. Funny how you always try to find an explanation for everything? I speak German to my son so I thought it must be becasue my mouth is confused because the mouth movements are slightly different with each language. The feeling like I was going to drop any moment, yes I had that too! I was never fully dizzy like things were spinning, but I just felt "weird" walking...I felt like I had a drift to the left, although I wasn't physically walking towards the left. I guess i just felt like I was drugged, the constant dull headache, the water retention, the foggy mind..I felt like all this water retention was swelling my brain or something. It was a truly awful feeling and that was when I called the doctor and told him I thought i was losing my mind. I felt like I was a perfectly healthy person just a couple of years ago and now I had pains and issues with almost my entire body, and the symptoms just kept piling up. It started with the itching during pregnancy (thank God I didn't take the steroids my OBGYN gave me, I knew I didn't have PUPPS!) and then the joint pain (which is now so bad that I truly know what it must be like to feel very old and stiff. I have to slowly get up and take my first steps gently because my feet and hips are soooo sore)....then it kind of stalled there with just those two things on top of the ever present swelling and bloating (but I was so used to that, I didn't even consider it a symptom anymore). When the brain fog and the balance issues started, that's when I knew, something was terribly wrong. I was so glad to see all that get so much better once off the gluten, but I guess I am quick to doubt myself...I felt like I was just jumping on the "gluten bandwagon". I by now means want to offend anyone here! But that's the feeling i got from doctors too though. Like they think it's just the hip thing to say now, that one is gluten intolerant. But would I ever be happy if this truly were my only problem. I think will have the testing done...

Does anyone know for how many days I should eat gluten for it to show up on the blood test?

Anna - thanks for sharing your story, it is SO GREAT to hear from someone whose experience is so similar to mine. Downright therapeutic! I'm not insane afterall :-)

[mushroom]

For how long have you been off gluten? If it has only been a week you can still get tested. If it has been longer, I am afraid you will not like the answer Six to eight weeks at the equivalent of three to four slices of bread per day, to be sure of an accurate result. As you have noticed you can start feeling better right away, which means that you can start healing right away, and the antibodies inthe blood can go away and the results be negative I went gluten free to try to cure my RA, and never could make myself go back on it to get tested.

[anna34]

I feel the same way Tina. It's remarkable how similar our stories are. My feet were so bad after my second pregnancy that I would wobble around the house and stumble. It was awful. The good news is, as you've found, that if gluten is the culprit you'll be feeling better once the testing is done and you start the diet!