I think my CD diagnosis is wrong- so confused!

[notsosure]

Hey gang- just found this board today, and while I know that no one can diagnose me online, I hope someone might have some insight in to what is going on with me.

I had my gallbladder removed 10/06. Before that I was perfectly healthy. I had occasional heartburn, but no digestive ailments to speak of, until the gallstone attack. My GB was in very bad shape (not functioning) and full of stones. After surgery I felt fine- about the same as before- until about January when I began struggling with nausea, diarrhea and constipation. By June all of these symptoms had become dramatically worse, and I began having pain similar to what I experienced during gallbladder attacks- it's significant pain above my belly button, concentrated mostly on my right side under the rib cage. One such attack (6/29/07) was severe enough for me to call the doctor, and for the doctor to send me to the ER. They didn't find pancreatitis, diverticulitis, colitis or trapped stones, though the stones I'd had the first time never showed up on an U/S as they were small, about the quality of beach sand.

So I saw a gastro who did bloodwork and diagnosed me with CD on 7/12. I don't know which panel was done. (I have a colonoscopy and endoscopy scheduled for 9/6) I immediately went gluten free. I cleaned my kitchen, cleaned out my fridge and pantry, bought some great books and networked with other CD patients. I had a very healthy diet to begin with, so i haven't had too challenging a struggle. I mostly eat lean protein, fruits, veggies, potatoes and brown rice, and we eat organically and avoid pre-packaged foods, so while I didn't like it, it was an eating pattern I could understand.

Unfortunately, in the five weeks since diagnosis I have become markedly worse. Instead of having 5 good days per week and struggling with occasional diarrhea and frequent constipation, along with nausea some days, I am now nauseous most days, and have not had a normal bowel movement since I started this diet. I have nearly constant diarrhea or loose stools, and no whole stools. Everything comes out in pieces, small amounts at a time. Two months ago I was still capable of normal stools more often than not. I'm also having pain for the first time since my GB came out. I admit, I cheated ONE time, on 7/27. I ate a sandwich to see what would happen. Nothing happened! I was mildly nauseous for a bit, but since all my meals make me nauseous, no big deal. No pain, no cramping, no diarrhea. On the other hand, I've been picture perfect for the last 9 days, and yesterday I was in terrible pain, right under my ribs, for hours. I also had nausea, chills and sweating, but no fever.

My aunt, grandmother and great-grandmother all had their GB's removed, and all needed repeat surgeries to correct scar tissue that was causing pain and digestive issues. They had open surgeries, I had laparoscopic, which I know means that the chance of scar tissue is small.

I just don't feel this diagnosis is right. The diarrhea I'm having isn't even following meals directly, and most of the time I can control it and have time to go home and go at my leisure, though on a few occasions I've had to leave the table to run to the bathroom. The pain and the diarrhea do not go hand in hand most of the time- yesterday's pain was not accompanied by diarrhea, though I did have three bowel movements. I've also cut out lactose- only eating parmesan off the block and skim milk, but neither seems to bother me at all. I had a glass of milk this morning and I'm fine- and there doesn't seem to be any rhyme or reason for sickness.

Does anyone have any thoughts? Shouldn't a GF diet make me better, not worse?

[notsosure]

If it helps, let me also add that I underwent surgery for ovarian cysts on 7/16, and also have painful bowel movements (extremely painful- 8 on a scale of 1-10) and pain during sex, though both come and go and they don't bother me that much. I am a 28 year old, married white female, never had a pregnancy, do not take any prescription meds, and take specially marked GF prenatal vitamins, which I also started 7/26. I exercise regularly- cardio and weights with a trainer- and am in good shape. Other than receiving weekly allergy shots, and the recent surgery (coincidentally, they found those cysts when I went to the ER for tummy pain), I'm very healthy.

No problems in childhood, though I have ADD (make of that what you will) and I'm a healthy 5'9 with strong bones and stronger teeth. Family hx of thyroid disease, GB disease, endometriosis (all biological aunts and female first cousins), cancer and heart disease.

Do they sometimes get this wrong? Could the bloodwork actually be picking up something else?

[cruelshoes]

Welcome to the group. Keep in mind we are not doctors, nor do we play them on TV. We can only speak from our own experiences.

It would be extremely helpful to see what labs were run. Can you try to get copies of your bloodwork results and the lab ranges? It is very unlikely to have a false positive bloodwork result. A false negative is much more likely. If your bloodwork is positive, the chances are great that you do, in fact, have Celiac Disease. Here is a link to the bloodwork that is generally required to diagnose CD.

Here is a link to the symptoms of CD. As you can see, it can manifest itself in many different ways. That is why the average time to diagnose it is around 11 years. Ingesting gluten can also create differing reactions sometimes. Sometines it seems to hit all at once, and sometimes it takes a bit longer. Some people never have any symptoms at all.

One other thing I should mention is that you should keep eating gluten until after you have your endoscopy. If you do have CD and you stop eating gluten, you run the risk of healing enough to get a false result.

Ask more questions as you think of them.
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

[notsosure]

Thanks Colleen, for your help. I checked out both the links, and I'll be sure to find out more regarding just what tests were run. I really appreciated your response. This is so confusing.

As far as continuing to eat gluten pre-endo, the doctor told me to go GF nearly 6 weeks ago and I have. I'll call and ask (again) what they want me to do, but given the increasing severity of my symptoms, I think it's pretty safe to say that if CD is causing this problem, then my gut definitely is not healed. If I do have CD and my small intestine shows no damage, it just confirms my suspicion that with or without CD, something else is going on. We shall see. Thanks again. I'll post once I know more.

[The Edifying Conscience]

Welcome to the board, Notsosure!

Colleen is of course correct about eating gluten before and during any testing. If I were in your shoes I would start eating gluten tonight! Better to be safe than sorry. If youtest negative on the biopsy there is no way that you'll be absolutely certain that it wasn't a false negative.

It could be that the MD was right about the CD diagnosis, but you might also have another medical problem. I suffered for several years with severe 'stomach pains,' intestinal issues, weight loss, migraines, fatigue, etc. Those symptoms are common in people with CD but in my case I also had undiagnosed Addison's Disease which is a disease of the adrenal glands. Once the Addison's Disease was managed the 'celiac' symptoms went away. Also, CD is an autoimmune disease and people tend to get more than 1 autoimmune disease.

Do get a copy of the celiac panel! If the correct tests were run those numbers can be quite helpful.

[ostrich]

Hey Notsosure! It could also be that you have another allergy/intolerance. Most of us have found other issues once we've gone GF. I would suggest starting a journal. Mark down the day, what you ate, how you felt, etc. Maybe you can find a pattern.
_________________
Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[notsosure]

Thanks so much everyone! I really appreciate the responses.

An update: finally spoke to the nurse at the gastros' office today (after leaving two messages this week, in pain and unwell), and told her that I was concerned that we were going to do this biopsy after so many weeks GF. She sort of blew me off and told me that it was fine, the "allergy" would show up anyway. then she told me that the doctor wants me to eliminate fresh fruits, veggies, sugar, dairy and artificial sweeteners. The sugar and AS are fine, but what am I supposed to eat now? I eat primarily fruits and veggies, which were NOT making me sick 6 weeks ago.

That's my primary complaint. 6 weeks ago I had the occasional trouble. I was mostly constipated, and then would have three or four episodes of mild diarrhea each month- some months, not at all. I also had mild to moderate nausea after eating. Now I have extreme nausea, pain, and painful, urgent diarrhea. Haven't had a single normal bowel movement in 5 weeks- everything is too soft and in tiny pieces, or diarrhea. Craziest thing. I just don't understand it. Hopefully these tests will shed some light on all of it.

If I do have another disorder, why would it wait to show up until I went GF? Or is that just an enormous coincidence? I never had a single digestive issue until that stupid gallbladder came out. I was totally healthy, with healthy digestion. This is so weird.

And I also posted about my prenatal vitamins. I triple checked that they are GF (called the company even though the label says so) but I wonder...could a build up in my system cause these symptoms? The doctor says no, but I think we all know that they don't necessarily know everything.

And yes, I know I'm obsessing. That's who I am.

I just want to feel better. To top it all off, I've changed my diet and haven't lost a single pound! I'm trying to lose the last ten that I put on when I was married- running three times a week and working with a trainer- but suddenly I'm stuck and can't get the scale to budge, AND my tummy is still bloated. You'd think that giving up pizza and beer (I don't do the GF foods much, too many calories, not enough nutritive value) would have paid off in some way. Ditto extra bathroom time! Oh well, just want to get well. We'll worry about my skinny jeans another day.

thanks again crew. I should change my screen name to the Digestive Detective, but I'm sure there are a lot of folks who feel that way!

[notsosure]

Oh yes, and I have been keeping a food journal the last ten days or so, and I'll continue indefinitely. I've kept one for months (trying to lose weight but it won't budge past the first ten pounds) I just didn't list symptoms, as they weren't noticeable really, until recently.

[nancw]

Hey NSS,

Since you have recently gone GF AND had ovarian surgery you could have any number of things going on to cause your ongoing symptoms. All of the advice on this thread is good, and I agree.
Your body may also be trying to find its new normal.

Were you also diagnosed with Polycystic Ovarian Syndrome as the cause of your cyst(s)? You might want to get re-checked by your gyno and perhaps have an ultrasound (yup - the "fun" internal kind) to see if there is some sort of aftermath from the surgery. The ovaries tend to be quite close to the bowel, so who knows. When I had my ovarian surgery they found my ovary was adhered to the bowel, and had to separate them. PCOS can create a lot of issues with blood sugar/insulin resistance and stubborn weight/inability to lose weight.

Oh yeah, shouldn't you have free access to your test results? You should send a formal, signed request asking that they send you the results. It's your right, right? You might find out you have a "wheat allergy"

Hang in there!
_________________
Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

[cruelshoes]

Your new symptoms also sound like they could be SIBO (small intestinal bacterial overgrowth). Here is a link. Have they tested you for that yet? Any condition that distupts the normal rhythm of the gut can cause SIBO.
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

[notsosure]

Great information crew! I will absolutely look in to all of this. I was not diagnosed with PCOS, and my cysts were dermoids. However, one was very large, about twice the size of my uterus. I wouldn't discount that as a source of my symptoms. I have been losing weight- the first 15 came off fairly easily once I returned to a healthy diet (we moved several times while waiting for construction on our home to be completed, and so we ate out a lot and were drinking too much- funny, my digestion was 100% fine then) and got back to the gym. It's just these last ten that don't want to budge, or so it seems.

SIBO huh? Definitely will check it out!

Thanks again for the great information everyone.

[ostrich]

[forinajoy]

I had polycystyic ovaries also....when you had your surgery, did they remove both ovaries? if not, are you sure that you don't have another cyst that is causing the weight problems or pressing up against the bowel? my cysts were so large that they were causing bowel problems and I had one (which was the size of a grapefruit) that had attatched itself to my uterus....just a thought...I also think that if you are going to have a biopsy that you need to add gluten back to your diet for a while....otherwise there is no point in having the biopsy......
_________________
Connie, mom to Ina, 14 y/o with CD

[notsosure]

Well, I went dairy free for a week and nothign changed. Added dairy back in and took lactaid, nothing changed. Was fine for a few days, then had a huge setback- ate at home, GF (GF bagel from the oven, not the toaster- I know better- and an organic spinach salad with olive oil and fresh lemon juice, and some shaved parm) and was sick all night. Next day, decided I was done with this (I have 5x as many problems now as I had before this GF diet? What is UP?) had 4 beers and two slices of pizza.

Nothing happened. Felt fine. Normal digestion, no nausea. Nothing.

Was GF the next day, but yesterday ate half a real bagel, and turkey on whole wheat. Nothing happened. Not sick, not tired, had the first completely normal BM I've had since I started this diet.

HOWEVER- I did go through my first panel of allergy testing this morning, and I have a very mild allergy to wheat, dairy, eggs and string beans (so far). But my allergist does not feel that these reactions (barely a level 2 of 4) are enough to be causing these problems, especially since I had no trouble before 6 months ago. She recommended that I go through all this testing at the gastro and then we can talk about whether the allergies are playing any role. It would seem that the answer would be no, since I eliminated them from my diet and got worse, not better, but I'm trying to be really good and listen to the doctors. Wish me luck, I'll keep you posted.

[The Edifying Conscience]

When you eliminated gluten from your diet what food did you supplement your diet with? It's possible the ingredients in the food have caused your problems and it's more noticeable now that you've eliminated gluten. Gluten free products are loaded with corn, potato, rice, tapioca, etc.


Edited because this post made NO sense to me this AM!