Celiac disease diagnosis years after RNY

[Brandy36 3]

Anyone diagnosed with celiac disease after they've had their RNY surgery?? I just had my endoscopy and colonoscopy to find out what could be causing my symptoms, low Iron, fatigue, headaches and upper abdomen pain and low grade fevers and they found six erosions in my jejunum when scoping my mall intestine. The doctor thinks it could be inflammation due to celiac disease which would cover all my symptoms and would be fairly easily treated. Anyone else experience this after they've had their RNY. It's been almost 5 years since I've had mine, thanks, Brandy.

[RNYCHAMP 2]

I'm 5 years the 11th of this month. I've lost 365lbs.....i too am having the same symptoms except low Iron. VERY bad upper abdominal pain to the point of almost passing out! I stay extremely exhausted as well.....stage 2 erosions as well....i havent looked into celiac yet, however i will. Thanks for the thread. I'll let you know.

[Brandy36 3]

I am still very new to this and am awaiting my actual diagnosis. Have been feelng very ill for over a year now and have had many blood tests and scans and have seen a variety of specialists. My sypmtoms have been overwhelming fatigue which Iron fusions did nothing for, daily multiple headaches, not Migraines, upper abdomen pain and especially on the right side but doesn't seem to be as debilitating as your pain, low grade fevers every day and basically feel ill and like I'm aging much faster than I should be. I'm 53 and feel like I'm 83! I also have hypothyroidism but that seems to be fine due to my synthroid. I have a lesion on my liver but it's small so they're just keeping a watch on it for now every 6 months.

I have/had GERD so they did an endoscopy as well as my almost 4 years late colonoscopy on Friday. That is when they removed a small polyp in my colon but don't think it's anything and found erosions in my small intestine six of which they are biopsying now so I won't find out for 10 days what's up with those. This is all new to me now and didn't even know that erosions were "staged" and what the staging represents. The only thing he could tell me was that it appeared to be inflammation and maybe due to Celiac disease.

I've felt so ill for so long at this point I'm ready to give up gluten if that will help even though they don't know for sure yet. I'm that desperate to feel better. So many of my symptoms mimic other illnesses and it takes so long to figure out what is wrong and it's very frustrating. I suppose having RNY in the mix just seems to complicate things also and makes it even harder for doctors to diagnose you. Also I'm not sure if RNY may have set off whatever illness I am having now and celiac from what I've read also contributes to malabsorption of nutrients which is normal with RNY even if you take the supplements and Vitamins they tell you to take.

I know there are blood tests to tell if you have celiac, just make sure you find the right specialist and make sure it's also not your gallbladder if you still have yours. I still have mine but it appeared fin on all my scans and I've had a lot! Also did they biopsy your intestine spots and give you any info on them. Hope you are doing better and keep us all posted if you find out anything as I will too, Brandy.

[RNYCHAMP 2]

Hey Brandy!

WOW!!! I am very sorry to hear you are a having a rough time! I'll deffinitely keep you in my prayers. I've already had my gallbladder removed. It completely filled with stones. One was 9cm....lol. i dont know if my pain is a stricture or what? I'm now hearing some people having problems with their intestines "twisting", causing the immense pain in the pouch area. I hope all goes well for ya, and please keep me updated. Im new to this app, so please bare with me, im learning....lol. take care.

Phillip

[Brandy36 3]

I've also heard of the intestinal twisting and since you've had your gallbladder out you'll probably need to look into your issues more also. I kind of jumped on the bandwagon when the doctor said it could be celiac disease thinking there's finally an answer to my probs so I bought a bunch of gluten free foods thinking that would make a change in how I felt and so far not! I need to continue my patience and wait till I see the results of my biopsies with the intestinal ulcers etc... I also have a question about the stomach that is not functioning anymore and if there could be an issue there considering they can't scope there. The staple line looked good but what is going on past the staple line. I need a doctor like House who would be able to figure me out after an hour show. Good luck with your health too, Brandy.

[Miss M 4]

I'm sorry that you guys are going through all this, I too have been having major problems post RNY and so far it seems that leaky gut, celiac, crohns, ulcerative colitis, GERD and hypothyroid are all associated with RNY due to malabsoption of nutrients, fermentation of food in the intestines due to intestinal paralysis and loss of intestinal length. we end up having what they call intestinal permeability. had I known all this and the post health issues maybe I would never have looked into weightloss surgery. so much for trying to gain a healthy life style by trying to lose weight added by surgery. especially when the surgeons don't know how to treat us after when we do have complications post surgery.

[Brandy36 3]

Miss m,

Thanks for all your information. I see my gastroenterologist on the 17th and will see if he has any more of an actual prognosis for me. My fatigue is really the worst side effect for me because I feel like only half a person! I suppose the fortunate part is my 2 daughters are 25 and 29 and if they had been younger my mother guilt would be horrible right now.

This doctor is not my bariatric surgeon and I get the impression from them that they did their part and unless something is wrong with the staple line or I need a revision or reversal then it's out of their hands. Do you see a new doctor for your gastric complications or are you still treated by your bariatric surgeon?

Those that have not suffered these types of complications I have a feeling are in denial that it could happen to them also. I followed all the rules and take my Vitamins and supplements daily and was always a healthy person except for the extra weight. This was not a side effect(s) I was even expecting and like you said and others before you the doctors are not equipped to fix these problems. I've seen so many doctors starting with my primary and then going back to my bariatric group twice before they shipped me off to other specialist of which I've seen just about as many as I can think of and the majority of them point a finger at my bypass surgery!

I seriously am worried that I may have to get a reversal but I just can't imagine going through that as well as worry if it would even work but I also know that I cannot live my life out like this as a 53 year old woman who feels like she's. Slowly dying! So thanks for your info I will look it all up and ask my doctor what he thinks. I hope we can all recover from this, brandy!

[Miss M 4]

Hi Brandy, sadly my surgeon has left me for dead and I'm now seeing another surgeon who cannot help me much as my original Surgeon (Mr Simon Woods) had not only removed a good length of my intestines but the SOB also threw the remaining intestines out so there is nothing for me to reverse. I tried to have intestinal reversal back in june of last year and the current surgeon advised me after surgery (opening me up) that there was nothing left for him to reverse and that I also had a gastrectomy which means no stomach pouch. so you could imagine how I'm feeling right now.

[Brandy36 3]

Wow I'm so sorry miss m I can't imagine having to go through all of that! I had the lap band before revising to bypass and have no clue what they'll be able to do to help me but just hearing your story and others I'm basically pretty scared right now. Anyway wish you the best and hope somehow things will get better for you. Maybe they'll develop a new specialty for gastric bypass complications god knows they'll make enough $$$$ from that too!

[schoollass 11]

Hi,

So I'm ten years out and have indeed had these problems. Iron and B-12 anemia, my gall bladder had been removed because it wasn't working(though when they got in there they found it was just irritated, not a single stone), adhesion surgery, migraines(diagnosed as chronic complex, I look like I've had a stroke), gluten intolerance, kidney stones, and most recently osteoporisis.

Now, most of these things were taken care of with the right nutritional supplements. Obviously the gall bladder, adhesions, and kidney stones required medical procedures. But the Iron, B-12, Migraines, and to some extent my kidney stones can also be handled with supplements(magnesium, butterbur, and feverfew are god-sends for my migraines, potassium citrate for the stones, awesome!).

I've had to tweak my eating not only for the diet that is necessary after gastric bypass, but to be gluten free which MAN is gluten in everything or WHAT?! Toothpaste, Shampoo, lotions, make-up, your Vitamins, food(even if it's not listed sometimes which BLOWS), then there is cross contamination that you have to worry about. Ugh! And once you get the hang of it, boy do you know if you've gotten ahold of some because it's nearly as bad as dumping syndrome! I mean WOW! The abdominal pain and migraines. And your whole taste changes too. Where if you get gluten you surely know it. I mean sometimes you can smell it even. Totally weird.

Anyway, you think you have that under control and then you're still having pain and bloating. What the hell? They actually hospitalized me and put me back on liquids because my liver levels were off. Said I had a "spasming sphincter of odie" which is where the bile duct and the pancreatic duct come together and go through the same sphincter, but it goes into spasms and causes immense pain. Where it drops you to your knees and tears rolls down your face type of pain. I never wanted to eat again. Then my GI was polite enough to tell me that it could happen by taking a drink of Water. Gee, thanks.

I finally get sent to the University, which is the only place that has surgeons that can even do the surgery. Especially since I have an altered anatomy. The surgery could fix the problem, but the side-effect is that you can get pancreatitis easier. Hmmm.... However, the GI specialist there says that I just have a bad case of IBS where the nerves are involved. Gee, thanks. Now I have to go onto the Fodmap diet and start eliminating about 3/4 more of my food. *lol* That's okay, I get to learn all sorts of new recipes and how to cook all over again! At least I won't be having pancreatitis.

My suggestion, keep to the gluten free diet. It helps with inflammation and fatigue. But it's difficult in the beginning because gluten hides everywhere. Try finding a celiac support group. This may help. http://www.csaceliacs.info/%C2'> In the mean time, take everything your doctors say with a grain of salt and remember that it's the "practice" of medicine. Because I can't honestly tell you how long my list of specialists is right now. It seems I have one for every major system of the body and then some. If I could just get them to all sit down together and talk it through I might actually get something figured out. Very frustrating. My husband and I really end up poking at each of them until something is done, but we're annoying that way. *lol* Plus alot of research online. Just remember that you're worth it and that you aren't crazy. Your symptoms are NOT in your mind and you deserve to be treated well. Good luck!

[crazyfroglady 4]

I am just now being approved for wls....I have been diagnosed with celiac since 2006 - it's loads of fun

mine was triggered by an illness... it's amazing what trips genetic things in our body and activates things

[MARILYNMONROE525 8]

Hi Everyone: I'm just joining today and I need to know what does RNY stand for?

[ladyfenixnc 5]

I believe that once the surgeons get your money and do the surgery, they give up on you. I am 5 years post op and have Fibromyalgia, Protein and Vitamin D deficiencies, and Iron problems. They don't tell you things you can do prior to the surgery that can help you because they want the money!

[Brandy36 3]

Hi Everyone: I'm just joining today and I need to know what does RNY stand for?

It's French for the name of the procedure Roux en Y.

[Brandy36 3]

I believe that once the surgeons get your money and do the surgery, they give up on you. I am 5 years post op and have Fibromyalgia, Protein and Vitamin d deficiencies, and Iron problems. They don't tell you things you can do prior to the surgery that can help you because they want the money!

I agree that mostly they are "surgeons" first and that's what they do best. Unless you deal with a group that has a lot of preop and postop support that's how it seems especially when something goes wrong that's not an obvious problem with your initial surgery.

I am now learning that a lot of my issues have something to do with the supplement they have me take which I've stopped due to the pain and chronic Constipation and making up my own with different Vitamins. So that's why I had a lot of pain in the upper ab area.

Now my headaches and fatigue appear to be due to my CPAP and it's change in air pressure. Even though I'm 50 lbs lighter than I was when I got my machine I now need more pressure, thought surgery would eventually help to eliminate it but maybe it's not all due to "obesity" like they always seem to preach.

If it's not making my symptoms better with a new machine and setting then maybe I'll search out a second opinion with a rheumatologist but for now I'm hoping that is all it is as I'm tired of the headaches and from being tired! Good luck to us all who suffer with things that can't easily be figured out!