Saw my gastro today...

[SandyRN]

And we talked about my scopes and the biopsies. I've still got Crohn's,
(it doesn't go away) but he did check again for celiac and it was negative. He called me a freak again because I'm positive serology for celiac but negative biopsy. That's twice now I've been tested for it and twice it's been negative, so guess that's not the answer to all my problems! Least I can still eat wheat!

He said there are places that show chronic inflammation but they look better than they did Crohn's wise and he thinks it's from the prednisone. So something good is coming out of taking this nasty drug.

I've got a pretty bad hiatal hernia and he changed me back to Nexium again because I'm still throwing up and gave me a new med bethanacol to help reduce the vomiting. GERD is still bad too, worse than the last time. So something good and something bad.

Heres hoping that I don't ever have another Crohn's flare again! Well, at least not any time soon anyway!

I love my doctor...he STILL was apologizing for what happened the day of the first scope when I went into withdrawl. I couldn't get a better team of doctors. I'm lucky I have this group of docs...don't know where I'd be without them!

So, thats the latest on my stomach issues. Now I just hope I stop throwing up because I'm really tired of it. Knowing WHY is a good thing, and hopefully the new meds will stop it all together. I hate going to a restaurant because I never know when the nausea is going to hit me.

Sandy

[SandyRN]

ps...the bethanacol is a smooth muscle relaxer and he said it is used a lot for hesitant bladders!!!!!!! So hopefully I'll be able to sit down and pee instead of doing toilet acrobatics trying to get my stream to start! LOL

[lisabar36]

Hi, I hope your medicine helps you!! I had to laugh at your toilet acrobatics. LOL I hope it helps and you don't get nauseous anymore. That has to be terrible! Sounds like you have a good doc. :) Lisa

[traceann]

Very glad to hear that at least all things have been identified - and are under care to get straightened out!!!! YAY!!!!!!!!!!

[SandyRN]

Thanks girls! I do everything but stand on my head sometimes to get my stream started. Peeing is NEVER a quick thing for me, so I'm really hopeful this med will help that as well. When I said toilet acrobatics I meant it! LOL

[loraleena]

Wait a minute. I have Celiac. If your blood work is positive, than you have it. It does not matter if the biopsy showed nothing. You may not have visible damage yet, or damage may be patchy and easy to miss. Your doc is saddly misinformed. Also many people are just gluten intolerant but not celiac. This can cause just as much damage to your body including autoimmune diseases. Many people on my celiac forum had their IC go away after iliminating gluten. Check out Celiac.com and read the forum and all the info there. PM for more info. I will help you as much as I can.

[dancemomof2]

Dontcha love potty acrobat's it is so fun to do. This leg just a tad bit forward.... ok you get the picture. Hope everything settles down with the Nexium. Keep us posted.

[leelee88]

Well it is good that you have some answers.. I hope your meds will start making you feel better soon... You really deserve a break from all this..

[SandyRN]

Wait a minute. I have Celiac. If your blood work is positive, than you have it. It does not matter if the biopsy showed nothing. You may not have visible damage yet, or damage may be patchy and easy to miss. Your doc is saddly misinformed. Also many people are just gluten intolerant but not celiac. This can cause just as much damage to your body including autoimmune diseases. Many people on my celiac forum had their IC go away after iliminating gluten. Check out Celiac.com and read the forum and all the info there. PM for more info. I will help you as much as I can.

I have always thought there was something strange about that....I mean how would I test positive if I didn't have it? Another thing, he couldn't get into my small intestine this time, just biopsied stomach and large intestine. So, I did sign up on the site you told me about and asked my question. I think when I see my primary on Feb 4th I'll have him test me again and we'll see what the bloodwork says. 2 positives would cinch it for me I think.

The thing is is that I trust this doctor implicitly. He's taken wonderful care of me when I had my major hospitalizations from the Crohns and he's also Tom's doctor and has been wonderful, so it's hard to second guess him, but I took your advice and signed up on the site.

Thanks so much for the information. I know NOT to eat gluten free til I have my retest done. I'm such a medical mystery!

[ICNDonna]

If you tested positive for celiac, avoiding gluten products could help you feel better. If you are doubting what you were told, you could just avoid wheat for a while to see if it helps. If you do need to follow a gluten free diet, you should know fairly quickly.

Warm hugs,
Donna

[loraleena]

Donna, when you go gluten free you need to avoid wheat, rye, barley and even oats(all oats are contaminated in the US unless grown in wheat free fields and stored in a gluten free facility.

Sandy,
You don't need another test. There really is no false positives only false negatives. Also, even if you didn't have celiac (which you do) you could be gluten intolerant (causes same issues but does not flatten villi). The current belief is that 1 in 133 are celiac but up to half of the population is gluten intolerant to varying degrees.

[mary124]

I too tested positive for Celiac Disease, but when they did the biopsy it came back negative. So like Sandy's doctor he told me that I didn't have it.
I do watch what I eat, I find that if I stay away from Wheat I do much better. Also, I noticed that a lot of the foods we eat are gluten free.

[mlzippy7]

Hi Sandy
I hope you get some relief some!!!

Take care

[loraleena]

I am very concerned for both of you that you have positive celiac tests and your docs are telling you that you do not have it. You have it. Gluten is hidden in everything from dressing to pills to soy sauce to cheeses to ice cream. The list is endless. If you have celiac you can't have gluten ever. In the end you will end up much sicker than now if you don't stop. Not going gluten free can eventually cause intestinal cancer. Please check out Celiac.com like the other girl did so you can get accurate info. Please PM for more info. I do not want anyone to suffer anymore than we already do. And, you may get much better from IC and save your body from more damage!

[SandyRN]

I'm just waiting til Feb 4th to have my blood tested again and after that I start the diet. I know in the past a bunch of people sent me info on the diet when I talked about celiac before....ANY help would be great because I'm clueless about this diet. I just got my IC diet straightened out and know what NOT to eat for that, and now this. UGH!!!!!! I can't wait to get my blood tests back though...this is a big mystery for me and it's been years since my first blood tests were done, like around 5 years now! At least he didn't see any damage yet.

[loraleena]

Sandy - just pm me and I will give you all the info you need on the diet. Also since you joined Celiac.com there is lots of info there. You may find that you do a lot better on the gluten free diet and eventually don't need the IC diet as much. This is not the case for me, but many on Celiac.com have had lots of relief. I can give you names of fabulous gluten free products!

[magtech]

Hi, I was diagnoised with IC about four years ago, IBS the whole nine yards. Recently I was diagnoised with chrons Diease. I have been trying to research this but am finding too much info to digest. Does anyone out there know if these dieases are related to an immune disorder? I was managing my IC, migranes, IBS, but now I have this chrons and I am so overwhelemed. There has to be an answer as to why we all share the same dieases? If anyone knows any info on this I would greatly and dearly appreciate it. I have seen numerous doctors and when I ask them this question they look at my like I have four heads!:cussing: It is very aggravating, and upseting to me. Please anyone:help:! Thank-you!!!!!!!:pray:

Meds: Elmiron 100mg 2xday, adarax 25mg pm, bentyl 20mg pm, dillaudid 2mg as needed, prosed as needed, zofran, instillations, did DMSO treatments for 8 weeks-made me much worse, many biopsies-moderate-severe IC:rant:

[SandyRN]

Hi, I was diagnoised with IC about four years ago, IBS the whole nine yards. Recently I was diagnoised with chrons Diease. I have been trying to research this but am finding too much info to digest. Does anyone out there know if these dieases are related to an immune disorder? I was managing my IC, migranes, IBS, but now I have this chrons and I am so overwhelemed. There has to be an answer as to why we all share the same dieases? If anyone knows any info on this I would greatly and dearly appreciate it. I have seen numerous doctors and when I ask them this question they look at my like I have four heads!:cussing: It is very aggravating, and upseting to me. Please anyone:help:! Thank-you!!!!!!!:pray:

Meds: Elmiron 100mg 2xday, adarax 25mg pm, bentyl 20mg pm, dillaudid 2mg as needed, prosed as needed, zofran, instillations, did DMSO treatments for 8 weeks-made me much worse, many biopsies-moderate-severe IC:rant:

I wish I had an answer for you! It's the answer to the question I've been seeking for years now. WHY? I truly believe that we share some sort of autoimmune factor, but surely don't know what it is! Crohn's IS an autoimmune disease where the body attacks itself and I've seen several people on this board who have it as well. It's not a fun disease to have but mine has been in remission for several years. I have mini flares but have not had any flares that sent me to the hospital in at least 3 years, thankfully. Crohn's can be one of the most painful things I've ever experienced when it's in a true flare. My fiance has it as well! He just had surgery to remove 3 feet of his intestine due to chronic inflammation from the Crohn's. I'm pretty well versed in the disease so if you have any questions feel free to pm me. I'd love to help you out if you need someone to lean on! I'm trying to find out if I have celiac as well as crohn's! UGH! I know how hard it is to get one diagnosis after another. Holler at me if you need anything!

Hugs, Sandy

[Charisse]

Sorry this is late but I had to jump in here. Please talk to your GI dr and find out which type of blood tests he did. I know my GI dr tested me for 3 different blood markers. I was positive for one of them and my biopsy was negative. She said based on that it was NOT Celiac but as others here say, I think I am probably reacting to Gluten but it's just not severe enough to cause intestinal damage. I have been playing around with the idea of eliminating Gluten again. I did it in 2003 but I also was eliminating several other foods at the same time and having a really hard time emotionally as well as trying to figure out what to eat. My GP said to "watch the wheat" or in otherwords, try not to eat it too often as it could turn to Celiac. I would love to see this discussion continue here on this thread so that others can benefit from any info shared. Again I was told since only one of my markers was positive and my biopsy was negative, that it's not Celiac. Sandy if you are this sick I do think the truest test would be eliminating gluten and just see how you feel. Just make sure you are prepared and do your research ahead of time because as others have mentioned, you will soon discover that gluten is hidden in everything. It's not just bread and pasta. It's in vinegar, salad dressing, added as a thickener to anything processed. They even dust flour on sliced cheese to keep it from sticking. The list goes on and on. I am sorry to hear you are still feeling so yucky but hoping the drugs have helped you a little by now. Hang in there:bunny:

[loraleena]

Any of you who have all these autoimmune diseases, and especially IBS (a garbage can diagnoses and the #1 misdiagnosis for gluten intolerance) should try a gluten free diet. Even if your celiac tests are negative that does not mean you are not intolerant to gluten. If you want clinical proof of gluten intolerance get a stool test through Enterolabs. Whether Celiac or gluten intolerant you need to stop all gluten. The best way to test is to eliminate for several weeks and reintroduce and see what happens. I tried this even after my results were positive. Oh my god. I was so violently ill within 10 minutes that any tempation to touch gluten again was gone! Gluten is extremely difficult to digest and can reac havoc on our immune systems if intolerant.

[SandyRN]

Charise, I will ask him what blood tests he did on me. He's only got part of my chart right now because he left the one practice and went to another one. I followed him but haven't gotten my whole chart moved yet. I need to though so he can find out what he's done for me and what he hasn't.

I'm just waiting on the 4th...I want these tests done asap.

I spose I should start my homework on this diet. It seems so overwhelming to me.

One thing....I've been really nauseated again and I think it's the bethanacol he gave me to help me digest more quickly. We went to dinner last night and I was so green all I could do was sip a coke (bad on the bladder, GREAT to stop me from throwing up!!) and stare at my food and occasionally take baby bites. I was so miserable we got our food to go and Tom brought me home. This reminds me I need to call the gastros office to get him to call in some more Compazine to keep me from puking. UGH!! I REALLY wanted the med he gave me to help me but it seems to be making things worse. I do just fine getting nauseated and throwing up on my own without a med that has a side effect of NAUSEA@*%&U^&!!!!

[Charisse]

Sandy ug that sounds awful. I have had the same problem at restaurants so many times so I can really sympathize with you. I know we've talked about this before but I have Gastroparesis which means my food digests a lot slower than normal. I have never heard of anyone getting Bethanacol for this problem. I just googled the drug and apparently it works on your smooth muscle (making it contract more) but not specifically in the stomach. From what I found it says Reglan works better for helping your food to digest - but I know most folks don't tolerate Reglan too well. Have you had a gastric emptying study to check for Gastroparesis? It's usually the last thing they check for after exhausting all other issues.

[loraleena]

Sandy, I hate to keep saying this, but even if your tests don't show celiac, you very likely may be gluten intolerant. You should do the elimination of gluten (after your tests) to see how you do and then add it back in. If you have nausea and vomiting, that is another classic symptom of celiac or gluten intolerance.

[tzatke]

Sandy, I've had Crohn's for forty four yrs. I've done pretty well after the first five years. I also have GERD and do not get heartburn but violent nausea. I find Tigan better than Companzine for mysefl. Also, my gastro (who's brilliant-I edited his texts for ten years) insists on Gaviscon and Carafate thirty min after meals for the GERD.

[tzatke]

CCFA.org will help with Crohn's. It is overwhelming at first; no disease for sissies.