Starting Out

[aderifield]

I was had a preliminary diagnosis of Celiac 6 days ago. I had had a very long history of dumping disease, malabsorption, steatorrhea, fatigue, fuzzy thinking. At one point, I was almost completely restrained to my home bc my dumping was so bad for a year and a half. Anytime I caught even a small virus, I would be down for weeks and this has interfered with my job history a lot. Last month, I caught a stomach virus which was going around work, everyone else was back within 3-5 days, mine turned into Colitis and I am still not recovered.

Now, this diagnosis which gives me some hope and comfort. I would give anything to live an even somewhat normal life and be able to maintain my life on an even keel. So, making these diet changes seem like a very small chore to me. I am not scheduled for biopsy until October and my doctor told me that though I measured in the lower range for Celiac, I should go ahead and make the changes to my diet, which I have.

Problem - I am feeling as bad or, worse than ever. I've been sweating profusely. Have nausea, stomach pain and still, a episode or, two of dumping everyday.

I feel as though my body is detoxing. I had developed some joint and bone pain in recent months and whereas they were localize, now, they are spreading. I am getting the tingling of my extremities and even my tongue. I hadn't even known these could be symptoms of Celiac until coming here.

My stomach is swollen and hard.

Okay, does this sound at all like what I should be going through at this point? I had read on so many websites that I should start to feel immediately better or, at least within days and now, am getting so concerned and disappointed.

I don't know that it's relative, but I had a perforated gallbladder about 10 years ago and have been on Welchol for my diarrhea for almost two years, which I am no longer taking, but might start back up if my dumping continues.

I appreciate the opportunity to come here and post and look forward to some input.

Thanks.

[Dixiebell]

Sorry to hear you are having so many problems. There are many others on here that know a lot more than I do, and they all say to not change your diet until after the biopsy. I'm sure others will respond soon.

[RiceGuy]

It is true what Dixiebell said about the biopsy. But, given how you feel, waiting until October may not be something you'd really want to do. Going gluten-free now will almost certainly mean a negative biopsy. However, if you are feeling better by then, you may not care.

The symptoms you describe do resemble those of many members of this board. So it seems Celiac is likely, IMHO.

For many, it does take time for the body to recover. For example, it was six months gluten-free before I noticed anything at all, other than not having the unquenchable thirst immediately after eating gluten.

[justChris]

start asap - can't hurt. i agree with everyone else - dont wait until october. i've had severe neuro symptoms (muscle wasting, spasms, tingling, numbness, and extreme joint and muscle pain, etc) for the last 6-months and just start w/ no gluten (only week in right now). still feel the same, but i doubt this will be cured in a few days or weeks. i'm figuring 6-months and i hope to god i feel better.

best of luck - these are easy changes to make with the hopes of big rewards...

- chris

[ToriMartin]

It is true what Dixiebell said about the biopsy. But, given how you feel, waiting until October may not be something you'd really want to do. Going gluten-free now will almost certainly mean a negative biopsy. However, if you are feeling better by then, you may not care.

The symptoms you describe do resemble those of many members of this board. So it seems Celiac is likely, IMHO.

For many, it does take time for the body to recover. For example, it was six months gluten-free before I noticed anything at all, other than not having the unquenchable thirst immediately after eating gluten.

Welcome Aderifield,

I'm a new member also. I have been tested (blood) for Celiac & it was negative... But after 12 years of being sick I just don't care what dr's have to say anymore... So, I went gluten free & 99.9% positive that's the cause of all my problems. I personally wouldn't wait until October if I were you. A diagnosis is a wonderful thing! But I wouldn't wait any longer than I have to... Sometimes you just have to take matters into your own hands.

Like I said, I'm a new member also & so far I've very impressed with this board! It's already helped so much! I've been researching as much as I can but I just couldn't get the answers I needed until I came here...

After going off Gluten my stomach is sooo bloated! But I think it's because I keep eating things I shouldn't on accident... What I did was go 5 dauys eating no carbs, no sugar, no gluten & no dairy. I introduces cheese one night & had IBS the next day (after days of no probs). So, I knew milk was one of my problems. I eat jerkey a couple days later. I was bloated & crampy that night then IBS again the next morning. So, I found out there was a hidden Gluten I didn't see until I looked harder! I believe the dairy intolerancer is caused by the gluten intolerance. Since then I have also found that Avacados give my sinus pressure & headaches. I eat a hard strawberry candy yesterday & became bloated, crampy & slight IBS this morning. So,m there was something in it... Anyhow, the reason I'm telling you this is maybe you could try it also. I'm not saying to eat gluten, but like others have said, keep a food diary. Keep track of symptoms that appear, ect.

I hope you start feeling better soon!

Also...

Unquenchable Thirst? Not to go off topic but I had that problem for months. I was tested for Diabetes & pre-diabetes twice thinking that could be my prob.... I have noticed I haven't had that problem lately! Well, I didn't actually notice until I read that! Is that a symptom of eating gluten?

Wow, I just love these breakthroughs! After 12 years it seems like all the puzzle pieces are coming together!!!

[aderifield]

Welcome Aderifield,

I'm a new member also. I have been tested (blood) for Celiac & it was negative... But after 12 years of being sick I just don't care what dr's have to say anymore... So, I went gluten free & 99.9% positive that's the cause of all my problems. I personally wouldn't wait until October if I were you. A diagnosis is a wonderful thing! But I wouldn't wait any longer than I have to... Sometimes you just have to take matters into your own hands.

Like I said, I'm a new member also & so far I've very impressed with this board! It's already helped so much! I've been researching as much as I can but I just couldn't get the answers I needed until I came here...

After going off Gluten my stomach is sooo bloated! But I think it's because I keep eating things I shouldn't on accident... What I did was go 5 dauys eating no carbs, no sugar, no gluten & no dairy. I introduces cheese one night & had IBS the next day (after days of no probs). So, I knew milk was one of my problems. I eat jerkey a couple days later. I was bloated & crampy that night then IBS again the next morning. So, I found out there was a hidden Gluten I didn't see until I looked harder! I believe the dairy intolerancer is caused by the gluten intolerance. Since then I have also found that Avacados give my sinus pressure & headaches. I eat a hard strawberry candy yesterday & became bloated, crampy & slight IBS this morning. So,m there was something in it... Anyhow, the reason I'm telling you this is maybe you could try it also. I'm not saying to eat gluten, but like others have said, keep a food diary. Keep track of symptoms that appear, ect.

I hope you start feeling better soon!

Also...

Unquenchable Thirst? Not to go off topic but I had that problem for months. I was tested for Diabetes & pre-diabetes twice thinking that could be my prob.... I have noticed I haven't had that problem lately! Well, I didn't actually notice until I read that! Is that a symptom of eating gluten?

Wow, I just love these breakthroughs! After 12 years it seems like all the puzzle pieces are coming together!!!

Thanks, for your comments and concern. Yes, it is nice to have a haven. Right now - home sick - it's been easy to control my eating and I am sure I have been gluten-free. I haven't even ventured anything that could be tainted - all fresh foods. I think I will remove dairy and take you up on your suggestion to keep a diary. No more I thinks or, I remembers.... I need the facts. Just the facts.

Thanks, again. It's nice to know that ppl are making headway and, also, just how they are doing it.

EDIT: Yes, I have an unquenchable thirst, always have though it's been much worse in recent weeks. My doctor tells me I am just below the pre-diabetic stage. It runs in my family.

So interesting - so many of my family members who are no longer living suffered digestive disorders starting in their forties without explanation as to why just as I have. Now, I have a far greater understanding of what they went through and am appalled at their (perhaps) needless suffering. I have another sister, 4 years my senior, who has chronic pancreatitis. Whoa... she's really sick and upon looking at her, I am always reminded that lucky me am just a 'little' sick. I've told her to get tested immediately - no one has ever done that for her. My pancreas and liver are still fine - thanks be to God.

Cheers!

I'm already feeling better! Man! This is a healthy place!

[aderifield]

Also, I'd like to know.... Before my blood tests came back, my doctor was monitoring me every week. Even on my last visit, we had finished, he had told me to make an appt for next week and then, my tests results came over the fax, he called me back in, told me the results, told me to make the diet changes and that he didn't need to see me until October after my biopsy.

So, I am armed with my computer for study, Lexapro for depression, my Welchol for dumping and my Zofran for nausea - both he claimed I should no longer need. (I'm not taking the Welchol anymore and the Zofran only sporadically when I REALLY need it.) Nothing else.

Is this par for the course? I'm glad to not be going in every week and thrilled to stop taking meds, but with these new symptoms accruing, I'm starting to feel anxious, shaky and sort of, yes, lonely and needy of someone's professional support. Though I know my MD is not a psychiatrist or, a GI, it would be nice to hear someone say, you're okay. You're going to be okay.... This is normal.

Ok, seeing that in print, I'm being quite the baby, aren't I?

(Forgive me, but I'm posting it!)

[ToriMartin]

I wish I could help more with your question... I'm sure someone else has your answers

I just wanted you to know you aren't being a baby. We need to express our thoughts & concerns. This is what will get us where we are going. I know the last 12 years have been tough & very lonely. You learn to live with it yet it's very depressing. I've had my times when I have just broken down. Now at least we have hope

[Guest gaiu.42dn]

A person seeking preliminary diagnosis of celiac disease must be consuming gluten. If the individual is not consuming gluten up to the point where they are tested, the Celiac Disease may not be discovered.

[vbecton]

Howdy aderifield. There are two ways to go about this. Either you NEED a confirmed diagnosis (like me), or you will become satisfied with the improvements brought upon by the dietary changes and that will be all you need. If you need the diagnosis to be confirmed, stay on gluten. Otherwise, stay gluten free.

When I first went gluten-free I thought I had been ran over by a semi! I believe it was 2 weeks of hell. Might have been longer. Then, when the nausea and "D" started to subside, the other food intolerances started to creep up. The first was dairy. The beginning stages of gluten-free can bring out other intolerances!! Next, I cut soy. Then, I cut corn products. Now I'm working on a new found fructose malabsorption issue, which means no more fructose. Yes, it's very limiting, but I now this is par for the course for many of us. I also know that many of these things are temporary and most of these foods can be reincorporated back into the diet after healing. I would strongly suggest cutting dairy. You may not need to cut anything else My GI said dairy could cause significant intestine damage for a healing Celiac. Better safe than sorry! My insatiable thirst is resolving day by day. I also was considered pre-diabetic, but at the opposite end of the spectrum with chronic low blood sugar as this can also result in insulin resistance. My blood sugar problems are completely resolved, unless I get glutened

I'm still working through my personal Celiac journey. Each person has a different healing path and this forum can be a great source of information. I wish you luck and let us know how you are doing!

[frieze]

Also, I'd like to know.... Before my blood tests came back, my doctor was monitoring me every week. Even on my last visit, we had finished, he had told me to make an appt for next week and then, my tests results came over the fax, he called me back in, told me the results, told me to make the diet changes and that he didn't need to see me until October after my biopsy.

So, I am armed with my computer for study, Lexapro for depression, my Welchol for dumping and my Zofran for nausea - both he claimed I should no longer need. (I'm not taking the Welchol anymore and the Zofran only sporadically when I REALLY need it.) Nothing else.

Is this par for the course? I'm glad to not be going in every week and thrilled to stop taking meds, but with these new symptoms accruing, I'm starting to feel anxious, shaky and sort of, yes, lonely and needy of someone's professional support. Though I know my MD is not a psychiatrist or, a GI, it would be nice to hear someone say, you're okay. You're going to be okay.... This is normal.

Ok, seeing that in print, I'm being quite the baby, aren't I?

(Forgive me, but I'm posting it!)

make sure your meds are gluten/wheat starch free.....if the brand name is,doesnt mean the generics are, and v/v.

[sb2178]

You could also try to get put on a cancelation list for a biopsy sooner. If you've only been gluten free for a couple of weeks, or a month, you could possibly still have visible damage. The danger with that is that you end up with a negative biopsy and then possibly have a harder time taking the diagnosis seriously.

Yes, it's miserable at first. I was sick as a dog for the first week, and then irritable enough to be outcast from human society for two more weeks.

Really, in the end, the results of the diet are what should drive your treatment.

[RiceGuy]

Unquenchable Thirst? Not to go off topic but I had that problem for months. I was tested for Diabetes & pre-diabetes twice thinking that could be my prob.... I have noticed I haven't had that problem lately! Well, I didn't actually notice until I read that! Is that a symptom of eating gluten?

It may not be a symptom for everyone, but it was for me. In fact, I'm not aware of ANY symptom which every Celiac will experience.

Later on I again started to get thirsty a lot, but it was accompanied by frequent urination. That suggested to me I had an electrolyte imbalance. Sure enough, it resolved once I started taking potassium.

Strange how things start cropping up after going gluten-free