GI issues - What to ask the doctor now?

[Hunter's Moon]

For those who don't know the whole story: I was recently diagnosed with GERD and what the GI thought was Colitis but since the biopsies were normal, he said it isn't. All blood tests that he's done were normal and ultrasound done yesterday was normal. I was prescribed Prilosec (which helps for the most part, some days are just more reflux-y than others).

 

We went to the hospital Monday night because I was weaker than normal, pale, and just sick of waiting for answers. They said I was probably malnourished and mildly anemic but didn't want to admit me because I had an appt. with the GI on Thursday and an ultrasound on Tuesday. They also couldn't get my medical records because we went to a hospital that is 30 minutes from home and not connected to the hospital where the GI practices.

 

We have the appt. tomorrow night and have no clue what to say to him. He has no answers, but I just get worse and worse. I'm living off corn flakes, rice, chicken broth, potatoes, and oatmeal. I get anxiety attacks when I think of food because it all makes me sick to some extent. I am scared of food but have to eat, obviously. My mother talked a psychiatrist and told us to bring it up with the GI to get a referral because the fear is normal in people with Colitis. I cry thinking about having to eat. I hyperventilate when I try something that I haven't eaten for awhile because I'm so scared of how I'll handle it (just added the potatoes in). I do eat three meals a day, and usually a snack or two, also.

 

What do we need to do? What do we need to say? This is new territory. This is getting harder and harder by the day. The stress of eating doesn't help, I know, but it is a genuine fear. I dream of eating something I'm allergic to and not being able to reach my epi pen in time and in my waking hours I know I need to eat something. I am hungry, but also feel icky all the time. We do plan to address the anxiety with a psychiatrist and I have a therapist helping, as well. We know the anxiety is from the physical condition though. I never had problems like this before, other than my peanut allergy.

 

We just talked with the GI over the phone and he is ordering a CT and we will be meeting with him tomorrow. He didn't realize the food issues were so severe and said he'll see what we come up with tomorrow. Is there anything we should bring up? Anything as all? I was happy when he said I had Colitis because I thought "Finally, a physical indicator. I'm not making this up!" But now, with the biopsies normal and all tests normal, I think to myself "Gee, maybe it IS all in my head. Maybe I am crazy. They'll stop trying to help soon." There was no stress prior to when this started. This is the 6th month with it. I was getting better about 3 months ago and then it went downhill again.

 

Please, I am desperate for help!

[z2_mom]

have you looked into celiacs disease or a wheat/gluten allergy. Your symptoms sound similar to what I was experiencing a year ago. I went on a strict allergy elimination diet, and found several food allergies. I cut out the offending foods and have been great ever since. No more reflux issues etc.

 

Your more than welcome to PM for more information.

 

:grouphug:

Lynda

[Hunter's Moon]

have you looked into celiacs disease or a wheat/gluten allergy. Your symptoms sound similar to what I was experiencing a year ago. I went on a strict allergy elimination diet, and found several food allergies. I cut out the offending foods and have been great ever since. No more reflux issues etc.

 

Your more than welcome to PM for more information.

 

:grouphug:

Lynda

 

They've done the blood tests (which I know are unreliable) and the biopsies (which I know can also be unreliable if they don't get the right spots) but everything was normal. He said they took a lot of biopsies because my colon has patches in it.

 

I will bring it up, though. I brought it up on our first appt., and he seemed knowledgeable about gluten (knowing that a gluten free diet is the only way to tell) but he hasn't brought it up as a concern. When I was getting my colonoscopy, a young girl next to me was getting one too and I overheard him saying that the biopsies should confirm Celiac in her, so how unreliable are the biopsies?

Edited October 12, 2011 by BeatleMania

[Twigs]

:grouphug::grouphug::grouphug:

[Margaret in GA]

They've done the blood tests (which I know are unreliable) and the biopsies (which I know can also be unreliable if they don't get the right spots) but everything was normal. He said they took a lot of biopsies because my colon has patches in it.

 

I will bring it up, though. I brought it up on our first appt., and he seemed knowledgeable about gluten (knowing that a gluten free diet is the only way to tell) but he hasn't brought it up as a concern. When I was getting my colonoscopy, a young girl next to me was getting one too and I overheard him saying that the biopsies should confirm Celiac in her, so how unreliable are the biopsies?

 

I don't know how reliable biopsies are. I do know that I am gluten sensitive, not celiac, and eliminating gluten and dairy made a huge difference in my life. I had an endoscopy several years ago that ruled out celiac, so I ignorantly continued eating gluten with the blessings of my GI doctor. Sometimes the only way to feel better is to eliminate the possible suspects. :grouphug:

Edited October 12, 2011 by Margaret in GA

[Greta]

This is all I know to suggest: http://gapsdiet.com/ The website is a good introduction, but I gather that the book is extremely helpful (maybe even necessary) if you decide to try this program. I've heard some pretty remarkable stories of healing not only GI problems but even autoimmune problems with this program.

 

It is so frustrating not to have answers. I am sorry that you're going through this. :grouphug:

[Paz]

I will tell you my GERD story from about 1 year ago. I became so sick that I could not swallow. I had just had some dental work and I was beginning to think my throat was numb or something. But it didn't go a way and I began to get extreme pain behind my shoulder blades. I was taking a bunch of otc meds, doubling up on them, with no relief. I went to the GI doctor and he gave me dexilant 60 mg which is amazing but I didn't realize it at the time. It is newer and is a 24 hour timed release. I could not eat anything. I was so sick I couldn't even take care of myself. My entire stomach and back would hurt when I would breathe in. My dh is not good in these situations (bless his heart) so I ended up staying overnight at my parents' house so my mom would be able to help if I got sick in the middle of the night. For about 5 or 6 months all I could eat was grilled chicken with no seasoning, white rice, eggs and toast. Whenever I tried to veer from this diet I would get super sick. I am a year out from this now and I can eat like a normal person again. I do have to be careful not to overeat and I can't do much spice but I really thought I would never eat normally again. It is important to explore everything with your doctor but just having GERD can be this bad. I had severe anxiety and really felt like I was literally going to die. I really didn't think GERD could make you so sick. Trying another med may help. The doctor may tell you they are all the same but some people do better on one than another.

[Supertechmom]

Just a note regarding the testing, celiac biopsies have to come from the small intestine. I wasn't sure if you were being told you didn't have celiac because of blood tests or biopsies from the colon. :grouphug:

[kalanamak]

Have they checked your cortisol level? There are a lot of "hints" when a lack of cortisol is from adrenal failure (Addison's), but if it is from a pituitary problem, many of those signs are lacking (the tan that won't fade, high potassium, etc).

 

Just a thought. Not very common, but just a thought.

[cuckoomamma]

You may not only have celiac or a gluten sensitivity, but other food allergies as well. You mention eating corn flakes. Corn is one of the top allergens. My girls and I have many food allergies. My first was diagnosed with GER when she was a baby and all they wanted to do was medicate her. I did an elimination diet, and she was fine.

 

Your diet is already pretty restrictive. I'd pull out the corn and see how you do. Oats can be problematic as well. Because you're eating such a small variety of foods, finding your triggers will be fairly easy. Have you done any reading on elimination diets?

 

Potatoes are also a nightshade and can cause problems for people. Rice would be a better choice if you can tolerate it.

Edited October 13, 2011 by Cuckoomamma
Edited to add potato comment.

[Negin]

I have nothing to say. I just want to say that I am thinking of you a lot, praying for you and hoping that all goes well very soon.

:grouphug: :grouphug: :grouphug:

My dh has suffered from similar issues for a few years now. Not as extreme as yours, but quite bad. He also recently had an endoscopy (which he now has every year) and a colonoscopy. All went well and he has no problems.

He often has to change his meds.

Natural approaches and supplements worked for a while. If you have the $, they are worth looking into.

If you have the $, acupuncturists and alternative health care practitioners can also help immensely. They have helped and continue to help my dh. He follows both approaches.

Keeping a food diary and see what exacerbates your symptoms may help.

I really hope you find relief and healing soon. :grouphug: :grouphug: :grouphug:

[keptwoman]

You may not only have celiac or a gluten sensitivity, but other food allergies as well. You mention eating corn flakes. Corn is one of the top allergens. My girls and I have many food allergies. My first was diagnosed with GER when she was a baby and all they wanted to do was medicate her. I did an elimination diet, and she was fine.

 

Your diet is already pretty restrictive. I'd pull out the corn and see how you do. Oats can be problematic as well. Because you're eating such a small variety of foods, finding your triggers will be fairly easy. Have you done any reading on elimination diets?

 

Potatoes are also a nightshade and can cause problems for people. Rice would be a better choice if you can tolerate it.

I was going to say that a lot of what you are noting as your diet has gluten in it, cornflakes, broth, oatmeal all probably have gluten and too much potato gives me HORRIBLE heartburn and general digestive misery.

I don't know what to suggest as alternatives, but I'm not sure the foods you are currently eating are necessarily digestive system friendly. My inclination would be to stick to gentle vegetables and rice, but I'm not you and I don't know your digestive and dietary history and how you have got to that particular diet.

 

I'm sorry you are so miserable, it sounds utterly awful!

[Hunter's Moon]

I met with the GI Thursday night and he prescribed Periactin (4 mg, 2x/daily) and also ordered a liver function panel because the panel from the hospital showed all the values doubled what they should be. I had my physical on Friday with my PCP and she ordered the results. She said the liver levels went down, but were still not normal. She also said I was anemic but just suggested a multivitamin with iron because the iron pills wouldn't help my bowels any.

 

We do plan to see a Nutritionist soon, as well as going back to my allergist. I am not allergic to corn, that's what the RAST says anyways.

 

Hopefully the Nutritionist can help me to cut out gluten and replace it, or advise me some other way.

 

Also, it doesn't seem the GI entirely understands my symptoms. He understands nausea is the biggest one, but I also have actual pain in my abdomen sometimes and just feel blah all the time.

 

I'd like to try cutting out gluten, but the reason I am down to the food I am down to is because I kept cutting out the foods that hurt me most. These seem the most "friendly" compared to what other foods do to me. It also changes and nothing is consistent.

 

Thanks for the ideas and support. I appreciate it. I just need to organize my thoughts and figure out a better plan of attack because this obviously isn't working. Hopefully a Nutritionist can add something beneficial to the mix.