Medical Help

[melmak5]

I am going to see a new primary care doctor and a new GI in the next few weeks and I would love any advice/input anyone has as to the "next steps."

* Last week of April - gas, bloating, D, trouble closing pants, especially after eating

* May 3 - woke in the middle of the night, sharp pain mid-chest; very painful 1 minute after swallowing food

* May 6 - burping w/regurgitation

* May 7 - Began Prilosec

* May 11 - endoscopy - normal (no biopsies taken)

* May 14 - Increased Prilosec

* May 18 - abdominal ultrasound - normal, small kidney stone (was told to ignore this for now)

* May 19 - started probiotics

* May 23 - switched to Zantac, 2x daily

* July 8 - hives on right arm

* June 11 - Prescribed a digestive muscle relaxant (showed hives on arm and abdomen to gi doc - not DH)

* June 12 - esophogial motility test - normal

* June 14 - rectal bleeding

* June 15 - Broke out in red spots on arms, torso, legs - primary care said they were "from old age and do not appear over night"

* June 28 - Celiac diagnosis via blood tests

* June 30 - bacterial overgrowth - test possitive

* July 1 - colonoscopy - normal, started antibiotics for bacterial overgrowth

* August 23 - pelvic exam - sharp pain

* August 24 - ovary/uterian ultrasound - normal

* August 31 - lots of abdominal pain

* Sept 1 - regurgitating food again

* September 5 - start second round of antibiotics for bacterial overgrowth

There is more blood work than I can remember but EVERYTHING is in the "normal" range.

My current problems:

abdomen pain (sometimes so sharp I cannot walk, but only lasts a few seconds)

bloating (i have lost 20 pounds but sometimes i cannot fit in my pants)

rectal bleeding

burping with regurgitation

c & d that keep me guessing

exhaustion (i am not anemic)

Half-way through the first round of antibiotics I felt like a new person. I had energy, I had an appetite, things were good. Two days after I finished them, I landed in the ER from either a ruptured ovarian cyst (although the docs claim my ovaries are "normal" or a possible glutening).

I have been gluten free since the middle of June.

I am female, 26 with no other digestive health issues to date.

I have asthma and allergies to pollen/dust/dander, but I have never been "sick" like this before.

I REFUSE to be told that all of this is just me "being a sensitive person who 'feels' my digestive tract more than others." or "there is no reason for you to be in pain or bleeding"

Is there some test I should ask for? What am I and the doctors missing here?

[NoGluGirl]

Dear melmak5,

I would encourage the gallbladder being checked out. It can cause horrible gastric distress, chest pain, and make you miserable. I often felt like I was having a heart attack. I even had difficulty breathing until I could belch! Abdominal CTs only will find low density stones, and HIDA scans are better at picking up stones in the bile duct. If your vomit is green, you are regurgitating bile, which would point to a blockage in the common bile duct. Blood can also pass. My cousin was stuffed with stones and was passing blood and vomiting blood as well. The idiots in the ER told him it was just stress. That was so ridiculous!

Sincerely,

NoGluGirl

[JNBunnie1]

Hey, how ya doin on the second round of antibiotics? Do you feel better, like the first round?

[melmak5]

ngg - gallbladder is on the top of the list. thanks!

jnb - i am less bloated, but all other symptoms have not improved on round 2 of the antibiotics... but the doctor gave me the SAME antibiotic at the SAME dose, which seems like a bad/not every effective, idea

I am admittedly cranky, not towards anyone here, but I feel like I cannot get enough sleep no matter what I do and I am ready to trade in this body for a new one

[JNBunnie1]

That does seem kind of dumb, have you considered asking Carla B what supplemnts she takes for killing off the bad bugs, like oregano oil and such? Most of those things are much safe (won't kill the good bugs) and you can take for a lot longer.

[hathor]

It certainly sounds like it could be a gall bladder problem. Do you find things worse after eating a higher fat meal?

I do know that tests for gall stones won't tell you everything. I was twice told I was OK. But I found that high fat eating and certain foods would put me in agony. More recent reading has disclosed that celiac can cause problems with gall bladder contraction, as well as some disorder where the duct itself tightens up. So the stomach doesn't get the bile, but there are no stones so doctors say you are OK ...

I'm not an expert as to all the gall bladder tests out there. It is worth reseaching it rather than relying on your doctor.

Given the hives, I also think it possible you have another undiagnosed food allergy or intolerance. It would be useful for you to keep a food diary with annotations as to your symptoms.

If you really want to see if your problems are food related, you could begin an elimination diet. Eat only a very limited selection of usually nonreactive foods. If after a week you find your symptoms are gone, then the fun begins -- slowly adding things one at a time to see if you react. Obviously this is time-consuming, but getting to the root of your problem would be worth it. Here is one description of how this diet works, what foods you can start out eating, which are the most common problems (yep, gluten is a high ranking one), etc.

Open Original Shared Link

If this is too extreme to consider, try eliminating dairy (and casein) and soy. These seem to be the big two that gluten intolerant folks frequently also have problems with.

A third possibility is that you simply haven't had time to heal yet. You haven't been gluten free for that long. You are starting out pretty sick. Even those of us who weren't that bad take longer than two months to feel completely normal. And this can be complicated if you happen to be accidentally glutening yourself.

[Ridgewalker]

More recent reading has disclosed that celiac can cause problems with gall bladder contraction, as well as some disorder where the duct itself tightens up. So the stomach doesn't get the bile, but there are no stones so doctors say you are OK ...

Hathor, do you remember where you read about that? If you could point me in the right direction regarding a connection between gall bladder problems and Celiac, I'd really appreciate it!!!

-Sarah

[hathor]

I don't remember where I first read that. It doesn't appear clearly in my bookmarks, but I'll do a more thorough check. I've got a lot of them and some haven't been organized or relabeled to be clearer.

Googling on "celiac gall bladder problems" just now, though, I found a number of hits. Here is one that looks useful:

Open Original Shared Link

If you have particular symptoms, you may want to do a google search yourself.

I wish I could find the name of that duct problem I mentioned. It had a particular name and I even told my husband that I thought I had that (until I cleaned up my eating, that is). It was mentioned in a regular discussion of all the disorders that have been linked to celiac and this one was shown under gall bladder and I looked it up.

[Guest thatchickali]

Ask about a HIDA scan for the gallbladder, it is more efficient than CT scan and ultrasound.

[melmak5]

-I have not noticed anything with fat causing more or less problems... I have been keeping a detailed food diary, so hopefully that will shed some light on things.

-The gallbladder is now on the top of my list.

-I was munching on pineapple yesterday (cause I read it has anti-inflammatory properties) and proceeded to have my lips and tongue puff-up, itch and then burn. I now have cold sores on the sides of my mouth and one inside my lip.

(Think angelina jolie, but not in a hot way)

I have never had any 'food allergies' before.

-I found one of Carla's old threads. I have been using coconut oil, but oregano oil cannot hurt.

Thank you all. Hopefully this will start looking up soon.

[NoGluGirl]

Dear melmak5,

You are welcome! The gallbladder, as hathor said, is a common issue with Celiacs. This disease tends to effect innocent bystanders, such as our poor little gallbladder! So many horrible miseries can be caused by a bad gallbladder. Another thing to check on is an overgrowth of yeast. That may have been caused by the antibiotics.

Is your tongue white? That tends to especially occur after eating fruit and high starch foods. Craving sugar is another symptom. You may have both of these conditions going on. Gallbladders are very difficult to find problems in. The disease is tricky to diagnose.

Dear hathor,

Thank you for the links! I have them in my favorites now! The information I got was on one of the Celiac sites, but I am not sure which one. I have read quite a few. The rotation diet is something I am going to be doing soon as well. Having multiple intolerances is not uncommon with this illness, as you mentioned. Also, yeast overgrowth like I have tends to cause Leaky-Gut.

Dear Ali,

I actually had nothing show on my HIDA scan. My doctor assumed that I was fine because of it. The ultrasound was also normal. Stones can pass between tests. As odd as it was, my abdominal CT was the one that showed a stone. Normally, only low density stones show in that test. CTs are not very accurate in other situations.

Unfortunately, the HIDA scan and ultrasound are not much better. They are only about 33 percent accurate at best!

This is quite a disappointment. I nearly had my poor gallbladder rupture right inside me, because my physician relied to much on them. I begged for him to let me see a surgeon, and thank God I did! It was removed in the nick of time, because at my post-op check-up ten days following the procedure, I found out it was severely inflamed, very irritated, and nearly ruptured!

Each testing method is better for finding different issues with the gallbladder. The CT picks up low density stones. HIDA scans can identify a blockage or restriction of the bile duct best. Ultrasounds show stones that are high density. Still, such methods are far from fool proof, as one poor young woman I met at the surgeon's told me. She said I was doing the right thing getting mine out then. She had been misdiagnosed 15 times in less than two months by ER doctors.

The woman was told she was just mental. Nothing showed up in the tests, despite having many run. She was in pain, and terribly ill. Finally, it was found she had sludge in her gallbladder; a substance like sand made of bile and cholesterol that ate through her gallbladder into her pancreas. Now, she has liver problems, pancreatitis (there is no cure for it), as well as kidney problems. The woman can never eat over a certain amount of fat a day, nor consume any alcohol for any reason. It is truly tragic that so many of us, like this woman, have suffered with the permanent ramifications of doctors' errors.

Sincerely,

NoGluGirl

[happygirl]

which test did you have for bacterial overgrowth and which antibiotic are you on?

have you re-tested to see if you are now negative?

[melmak5]

Noglugirl - I haven't noticed any "sugar cravings," but I do feel like I need to brush my teeth more frequently.

happygirl - I had 1 breath test (it is not type specific). Xifaxan is the antibiotic I have been put on twice. I did not have a 're-test' between, the doctor just refilled the rx because of the pain.

[NoGluGirl]

Dear melmak5,

I do not know if that is indicative of yeast. If you have a sour taste in your mouth, or an acid taste on your tongue, that is probably a gallbladder issue. I used to get that way. It is odd how your body works! Those tastes in your mouth can give you the urge to brush your teeth more trying to get the taste off of your tongue!

Sincerely,

NoGluGirl

P.S. Hi Laura!

[melmak5]

I think I discovered that I was glutened two Fridays ago, I am almost 100% positive.

I went out to eat and had a lengthy back and forth with the waitress, but about 7 bites into dinner I felt really full, bloated and nauseas.

I think it explains my pain, bloating, fatigue, exhaustion, rectal bleeding, inability to read for more than a few minutes and my skin peeling this past week.

I am not "thrilled" but I feel a lot better knowing what i s going on.

I finished up my course of antibiotics, ramped up the probiotics and the gas must mean they are working!

[NoGluGirl]

Dear melmak5,

A glutening can definitely make you very ill for a while afterward. I am glad you figured that out! I never eat out. My reaction is too violent. I am in enough danger sharing a kitchen with careless parents! In fact, I might have been glutened yesterday.

I am glad the antibiotics seem to be working! That is great news! Bacterial problems can really mess up your system. Keep in mind that gallbladder problems wax and wane. You may be alright for a while, then get very sick again. Just keep tabs on your symptoms, and that should help determine whether or not your gallbladder contributes to your issues or not.

Sincerely,

NoGluGirl

[melmak5]

Noglugirl - thank you very much. I really appreciate your brain and your heart during all this.

Today it feels like I am burping fire. Hopefully this new doctor tomorrow will have so ideas.

Yeast and gallbladder are on the master list.

[NoGluGirl]

Dear melmak5,

I remember that burping fire feeling! It is awful! Before going gluten-free, I actually had to sleep practically sitting straight up, despite taking Prilosec twice a day! The gallbladder is bad about causing that as well. Yeast contributes to stomach issues, though. I know I am having a hard time with it right now!

I was on antibiotics, steroids, and hormones for years. Yeast loves that stuff! I found the pathology so fascinating, I ended up writing an essay on it for my Effective Writing course last year. If you like, I can e-mail it to you. Just PM me with your personal e-mail. It has to be sent in an attachment, so that is why I cannot send it through the forum.

I will be anxious to hear what your new physician has to say! Hopefully, this doctor will have some ideas as to what the trouble is. I even did the Helidac Therapy for four times as long as most people, and the misery still returned. That was after my gallbladder was out! The gluten made a big difference for me, but the yeast is adding to my trouble, on top of the fact I could have Lyme. Let me know how everything goes tomorrow!

Sincerely,

NoGluGirl

[melmak5]

I met with the new doctor. Overall impression, good.

-She is questioning my celiac diagnosis because a biopsy wasn't done

-She said that because I have pain randomly (sometimes waking me up in the middle of the night) it would be unlikely, but not inpossible for it to be my gallbladder. (gallbladder problems = pain an hour or so after eating)

-She is having me tested for another parasite

-She thinks its possible I have another food allergy/intollerance (other or in addition to gluten)

-She wants me to add Benefiber to my diet to help with the D

(I question this because it is wheat derived, even though it is "gluten free" I am just really nervous)

-She said for me to not give up, that I have done a lot of research and she is looking forward to following up

[NoGluGirl]

Dear melmak5,

I am surprised about what the new doctor said about the gallbladder. I always read that attacks were more common in the late evening and early morning hours. It also said that attacks tended to occur several hours after eating. You kind of have to go by how you feel about it. If your initial impression is good, then go with that!

My doctor knew I had to be Celiac, due to the problems I have had. I had GI work done, but do not even know if they took a biopsy, and honestly if the did, they probably did not know what to look for. The entire team of doctors I had working on me were complete morons. These geniuses could not figure out why I was losing more weight, although I had been on a liquid diet for four days! Can you say DUH?!

I would be afraid to take fiber derived from wheat, too. That makes no sense. How does it have no gluten? I took Fibercon on the recommendation of that GI doctor heading the team that did all that horrible stuff to me, and it nearly killed me! Psyllium husk is particularly deadly in my opinion. Don't take that crap!

Other food intolerances are a good possibility. I am concerned I have them. I need to do a rotation diet. I am planning it right now. There are some rules with it, like you cannot eat the same food more often than once every four days.

Parasites are something all of us likely have. We eat fruit and other things that have microscopic organisms in them. No one can see them with the naked eye. The idea of having a worm terrifies me! You know some of them even have eyelashes?

Sincerely,

NoGluGirl

[JNBunnie1]

Um, I wouldn't take any fiber supplements that are wheat derived, but my understanding was that psyllium is gluten-free? Some people's digestive systems may not be able to handle it, but that doesn't mean it's got gluten in it. And it's not a bad idea to take a fiber supplement to try and help stop the D.

[NoGluGirl]

Dear JNBunnie1,

I think psyllium is gluten-free, but many people do not tolerate it. My system does not like it. I will never take that again! Talk about pain! There are a number of fiber supplements, but I never tolerated them. Those idiots up at IU Med told me to eat a bowl of bran everyday. You know how that ended up!

Sincerely,

Jin

[melmak5]

I cannot mentally get my mind around made-of-wheat-but-doesn't-contain-gluten, so I am going to pass on the benefiber.

I am going to give citricel a shot.

I dropped of my sample for the parasite test. I doubt I have one, but it will be good to cross it off the list.

I am cautiously optimistic about this new doc. She seems like the "excited to discover the cause" of all of this.

I would rather push for a food allergy test than do an elimination diet, but I am not sure if she is game for that right now. The prospect of cutting more things out of my diet seems like it could crush me, but I cannot keep living like this, so maybe its worth it.

[tarnalberry]

I would rather push for a food allergy test than do an elimination diet, but I am not sure if she is game for that right now. The prospect of cutting more things out of my diet seems like it could crush me, but I cannot keep living like this, so maybe its worth it.

part of the problem is that food allergy testing is:

1) unpredictable

2) unreliable

3) incomplete

it won't necessary always show a result when it should, doesn't always accurately reflect your allergy status, and won't even hint at things you can't tolerate but aren't allergic two (two different physiologic processes).

[NoGluGirl]

Dear melmak5,

I hope you do not have a parasite! Those things are never good to have, but they sure can cause serious trouble!

We will hope for the best! Meanwhile, I can understand the cautious optimism. The fear of being disappointed is all too common among those of us on the forum. Please post the results when the test returns!

It is good this doctor wants to find the cause. Illness is all too often diagnosed, but not completely resolved. Symptoms tend to be treated, but that does not get to the root. So many doctors load their patients with pills, and then cannot figure out why the do not get well. How ridiculous is that?

I would pass on the Benefiber, too. Wheat is dangerous for us! The Citricil hurt me, since psyllium is in it. All you can do is try it, and see how you do. Everyone has a system that is unique.

I am probably going to do a rotation diet soon. The scratch testing for food allergies is terribly inaccurate. Rotation diets are more helpful in identifying additional sensitivities for the most part, but do serve another purpose. Rotating foods prevents new sensitivities from developing, and maximizes nutritional value. I might as well go for it. I am just trying to figure out how to do it without going broke!

Dear tarnalberry,

I agree that elimination diets are safer. They can be tricky when there are delayed reactions, though. However, keeping a food journal should help in clearing that type of thing up. I am working on my diet plan now. I worry I may have developed new sensitivities. I hope not, but at least the rotation diet might help clarify that. Lyme may be a problem for me as well.

Sincerely,

NoGluGirl