Left Doctors Appointment Feeling Perplexed....

[Islandgirl]

Hi everyone! I just found this site about an hour ago & would appreciate your thoughts on my last few weeks. History: I've always gotten crampy, gassy & run down feeling after eating what I used to call "Carbs". I thought everyone was like that. I'm never sick so I never said anything. I'm 41 y/old. Last September I went thru an over the top, stressfull 3 month period unlike anything ever before. During that time I was in the bathroom up to 7 times per hour, sometimes almost not making it in time, my stomach felt like knives when I ate anything other than protein shakes & nuts such as Ritz, Goldfish etc... I LOVE CARBS! I dropped 25 pounds in the first 2 of the 3 months. I loved the weight loss at 1st, but then it started to get a tad scary. I figured when the stress event was over, everything would go back to normal. That did not happen. When life went back to normal, I ate like I did before and the scale went up 10lbs, but all the bad things stayed in overdrive. Months passed until a couple of weeks ago when I couldn't take it anymore. The gassiness became so bad, I couldn't go places w/my family, stand in lines at theme parks, was white knuckled in closed in rides and on the edge of tears the whole weekend while being mortally embarrassed over gas that occurred almost every 5 mins. The next day I got on the net and input my symptoms and it came up w/eight IBS or Celiac. Several non-related sites said that if it's IBS, then the symptoms will stay no matter what you eat - you need drugs to fix things. Celiac was Gluten-free diet. So I thought before I go trapsing off to the Doctors, I would try the gluten-free diet for 2 weeks. The 2nd day I was 80% better. I felt better mentally, the gas was almost gone, no more knives. At the end of the 2 weeks the bathroom visits returned to normal - I shook my head at how warped it was that I was overjoyed when going to the bathroom returned to "Normal". I am a new person - seriously. I feel SO GREAT! I read the antibody blood test may come back negative even tho you have Celiac if you are already on the diet, but I went to see a digestive specialist anyway because I'm one of those people that needs a definite answer. He listened to what I had to say and said he severly doubts I have Celiac because it's not that common (tho I read differently online) & he said it sounds like IBS where my intolerance is to Gluten - I almost felt like I had to convince him to order the blood test anyway. My test is due back next week. I left there feeling like he thought I was some internet searching crackpot LOOKING for a problem which is SO FAR from the truth - the very thought of never having my most favortie foods whenever I want is enough to make me cry. I would love any thoughts you all may have on my experience so far because I really think celiac is what I have & if the test comes back negative, well... I don't know what to think.

[RiceGuy]

Well, I wouldn't be the only one who will tell you that the diet is the best test for gluten intolerance, and it seems you've already gotten the results. Also, doctors are often terribly uninformed, so it's no surprise he said what he did. Even though tests often come back negative, I'm glad you pushed for it. You do need answers, but I'd have to guess you won't be returning to eating gluten no matter what the results say.

Also, note that the 'S' in IBS is for Syndrome. That's because the cause is unknown. So when your doctor tells you it's IBS, he's really saying he doesn't know the cause!

As for the diet, you'll find after awhile that what looks like a lot of restrictions isn't actually so. True, it can be difficult to adjust at first, but many will tell you how their eyes have been opened to a whole new range of foods. My diet was never as diverse as it is after going gluten-free, and I'm still finding more things I never considered before. That's even with all the other things I have to avoid, including dairy, eggs, meat, sugar, potatoes, tomatoes, peppers (and all other nightshades), and a few other things. I just began gluten-free baking, and I'm already using several different kinds of gluten-free flour. Ask the typical American to list different kinds of flour or grain, and you won't get much!

I hope you get all the answers you need, and of course, feel free to ask any and all questions you may have.

Welcome to the board!

[Lisa]

Welcome to the Forum:

Some of the symptoms that you listed are among the over 200 for Celiac. I think that you are correct to pursue this avenue. Don't let your doctor discourage you because I don't think that he is very well informed.

The blood tests are not always accurate and you have been gluten free for a period of two week before your testing. Blood test can rule Celiac in, but it cannot rule Celiac out (make sense?). It is the same with and endoscopy and biopsy.

The most reliable test is a positive dietary response and that seems to be a clear indicator to you.

The gluten free diet is a little overwhelming in the beginning and it get much easier as time goes by. You don't have to miss your favorite foods. With some variations you can eat just as well, if not better as you did before.

This place is the best source of information available. Glad you have joined us.

[Lisa]

Hmmm...Great Minds!

[Jestgar]

he said it sounds like IBS where my intolerance is to Gluten

How is this different (practically speaking) from Celiac?

[Islandgirl]

How is this different (practically speaking) from Celiac?

That's what I'm thinking too. He basically said that if the test comes back positive for Celiac - "Game over.". But if it comes back negative, then "It's 98% No Gluten IBS ". When I said I had read of false Celiac negatives, he said, "We could put you back on Gluten, wait a few weeks and stick a camera down your throat and look for the illi (something like that - little hairs). Do you WANT that test?" He said it like I was hoping to become a lab rat for multiple invasive proceedures..... Me who is never sick - always healthy and would rather go to the dentist then go to the doctors - I was not happy! Almost like he was fishing to see if I was a potential Munchhausen (sp) patient.

Question: I've read several postings from people that are self-diagnosed and leave it @ that because tests came back negative, etc. Does anyone identify w/my feeling to be medically diagnosed so for the rest of my life I'm not saying that I think I am Celiac, but the doctors say I'm not so I just eat this way because I self diagnosed myself? This even extends to my husband on a very minute level. He knows I feel 100% better this last 3 weeks, but I have a feeling he is really resting on this blood test to be able to say "She's Celiac" or "If she eats that, her tummy will be upset." See the difference? Gheesch - I'm in this whole mental emotional thing right now and the waiting until next week is consuming me.

Side note - thank you for your replies. I was really hoping someone responded this morning as I signed on. I need some friends that can help me. For three weeks I've felt like the cheese that stands alone -

[aikiducky]

Cheese that stands alone... Welcome to the board, you're not alone here!

I don't have an official diagnosis, because I went gluten free before testing, had a negative blood test, and I couldn't face eating gluten ever again to try and get a positive test result.

I did wish (sometimes still do) that I had an official diagnosis, but you know, the longer you go on, the easier it gets. By now everybody is used to my gluten free status and it's just not an issue. It's so obvious that I feel much better and am healthier than before.

My husband needed some time to accept things but then again, so did I, and I had the evidence of feeling my symptoms first hand, he didn't. Nowadays he's totally on board and supportive.

Usually if I need to tell people about my diet restrictions I just say "I can't have gluten, dairy etc...." and leave it at that unless they are really curious. The trick is to not feel defensive about it, just state the facts as you know them. That will be easier once you've been on the diet for a while and notice how much better you feel. I think people don't doubt me because I genuinely find the thought of eating gluten so off putting, since I get so sick.

If someone wonders if I really need to be so careful with cross contamination, I say something like "I know, it's too bad isn't it, it's such a hassle, but it's better to be safe than sorry isn't it". I'm apologetic about the fact that people have to go to some extra trouble, but I'm not apologetic about the fact that it's absolutely necessary, if you see what I mean?

Hope that helps.

Pauliina

[Nancym]

You don't need a Dr's diagnosis. That's just emotional wishy-washiness which other people will pick up on unless you're firm. Simply take a firm stance and say "NO! I do not eat wheat. I have celiacs". Glare if you need to. The husband will most likely come along as long if you're resolute.

And remind me of all this resolve when I have visitors coming to my house dragging their wheat-laden crap with them. I think I'm going to make my own stand and say, "No crumbly wheat things in my house thank you".

[Nantzie]

There's so much Cheese Standing Alone people here that we could open up our own cheese shop. I was curious about how many people here had an official diagnosis that I did a poll here a few months ago. Of the people who answered, only about 40% had an official diagnosis. Finding that out really surprised me, and made me feel more confident in a lot of ways.

The only time I ever discuss not having an official diagnosis is here, when we're talking about things like this.

Other than that, in real life, with family friends and restaurants, I say I have celiac and leave it at that. My family and friends are so used to it now that I don't need to explain anything, and restaurants just need to know how to cook my food. It just keeps things more simple and straightforward to say celiac.

Nancy

[hathor]

Gluten intolerance causing IBS (not that I've ever heard of that one) would call for the same diet as celiac. Whatever your blood tests say (here's hoping that your doctor ordered all the ones you need -- sometimes they don't and your doctor doesn't sound that informed), you actually do have an "official" reason to avoid gluten. As if your positive response isn't enough proof!

With two weeks off gluten, I don't know that the blood tests would be valid anymore. If they come back negative and you are unwilling to go back on gluten for later testing, you could always arrange yourself to do Enterolab testing. The antibodies in stools supposedly persist for up to 12 months off gluten.

Although I had a positive response off gluten, it wasn't as dramatic as yours. (My symptoms were different.) I wondered if I was talking myself into something and I know my husband thought I was. I did the Enterolab testing just to confirm there was a reason to go to all the effort. That will show me -- I found out I had four other intolerances as well. Now my husband is a believer (except for the yeast result ). And it has the added benefit that you do it yourself -- you don't have to convince a doctor of anything.

Chances are your doctor won't accept the Enterolab results because Dr. Fine has yet to publish his data. But it comes down to whether they would convince you to do what your experience with eliminating gluten shows you should do. Also, you can test in a year and see how you are doing (are the antibodies down? the malabsorption?).

[Islandgirl]

Wow - thankxs everyone. Waiting on the labs & I'm on pins and needles - hopefully a few more days to wait. I left a call to see if the labs were in this morning & no one called me back - UGH! This is a big practice - something like eight locations locally. Well, I'll call again tomorrow. I'm starting week four gluten-free today but not eating much other than tunafish & veggies, fruit because I decided not to take the time to learn all the ingredients I can't pronounce if I end up not having Celiacs, but as more & more time passes, AND I feel so well, I just don't know about "going back" to eating regularly again. It hurts me to type that! I would dive into an entire sleeve of Ritz crackers right now if I thought about it hard enough!

[Karen B.]

That's what I'm thinking too. He basically said that if the test comes back positive for Celiac - "Game over.". But if it comes back negative, then "It's 98% No Gluten IBS ". When I said I had read of false Celiac negatives, he said, "We could put you back on Gluten, wait a few weeks and stick a camera down your throat and look for the illi (something like that - little hairs). Do you WANT that test?" He said it like I was hoping to become a lab rat for multiple invasive proceedures..... Me who is never sick - always healthy and would rather go to the dentist then go to the doctors - I was not happy! Almost like he was fishing to see if I was a potential Munchhausen (sp) patient.

Question: I've read several postings from people that are self-diagnosed and leave it @ that because tests came back negative, etc. Does anyone identify w/my feeling to be medically diagnosed so for the rest of my life I'm not saying that I think I am Celiac, but the doctors say I'm not so I just eat this way because I self diagnosed myself? This even extends to my husband on a very minute level. He knows I feel 100% better this last 3 weeks, but I have a feeling he is really resting on this blood test to be able to say "She's Celiac" or "If she eats that, her tummy will be upset." See the difference? Gheesch - I'm in this whole mental emotional thing right now and the waiting until next week is consuming me.

Side note - thank you for your replies. I was really hoping someone responded this morning as I signed on. I need some friends that can help me. For three weeks I've felt like the cheese that stands alone -

Your doc may have asked in that fashion because of patient reaction to the idea of having a camera down your throat. I've had several people react to a description of an EGD like "You let them do that to you???"

I definitely understand the desire for an official diagnosis.

• It makes a difference to family and friends
  
• Insurance companies (who may approve more frequent specific test for Celiacs)
  
• It makes a difference when you have to get brand name instead of generic prescription drugs (to make sure you aren't getting wheat starch)
  
• It makes a difference when you travel and have to explain to Homeland Security why you have cans of food in your luggage (or at least it did for me)
  
• And it may make a difference on your taxes if you want to keep up with it https://www.celiac.com/st_prod.html?p_prodi...-49107043697.4c
  

and most important, it let's you know it's not just you.

[wowzer]

I originally felt I needed the official diagnosis. Of course my blood work came back negative. My doctor did agree that I still could be celiac. My doctor did give me the enterlab information. It happened that he had been to a seminar when I first brought this up to him. I felt I had DH. I have a little sister that was diagnosed at a year old. When I think back about my father in the bathroom after every meal, I wonder if he had it. I have been gluten free since the first of the year. I've had enough benefits to make me stay on the diet. If you feel better on the gluten free diet you have your answer.

[Islandgirl]

Well, ugh... just as I thought....blood test was negative. They want me to keep my follow up appt. I told hubby and he said the follow up sounds like a waste of money. He said "Just go back on your food and see what happens." I think I'm going to do both......eventually. I'm going to keep my appointment to see what they have to say now that the test was negative AND go back to wheat but not until the beginning of July. We have a tropical second honeymoon planned in June (6 weeks) and I just feel too great right now to screw that up right before this trip. If it wasn't for needing to prove it, I would just stay on the diet & leave it alone right now. I don't what you officially would call what I have... Celiac or a gluten intolerance IBS (per the doctor) , but taking that delish' food out of my diet has radically made me feel better. I just do not want to go thru my life saying ..."I can't eat that." "Why?" "Oh, it'll make me feel bad." and get that look on faces like I'm a hypocondriac. Okay... I'm being a bit pissy right now. It tweaks with my mind when I just KNOW something and have no proof to back it up.

[jdp364]

Well, ugh... just as I thought....blood test was negative. They want me to keep my follow up appt. I told hubby and he said the follow up sounds like a waste of money. He said "Just go back on your food and see what happens." I think I'm going to do both......eventually. I'm going to keep my appointment to see what they have to say now that the test was negative AND go back to wheat but not until the beginning of July. We have a tropical second honeymoon planned in June (6 weeks) and I just feel too great right now to screw that up right before this trip. If it wasn't for needing to prove it, I would just stay on the diet & leave it alone right now. I don't what you officially would call what I have... Celiac or a gluten intolerance IBS (per the doctor) , but taking that delish' food out of my diet has radically made me feel better. I just do not want to go thru my life saying ..."I can't eat that." "Why?" "Oh, it'll make me feel bad." and get that look on faces like I'm a hypocondriac. Okay... I'm being a bit pissy right now. It tweaks with my mind when I just KNOW something and have no proof to back it up.

Be sure to ask what your overall IgA number was. If that number is below the normal range, you can pretty much ignore any additional "normal" levels indicated in the test, and the result is deemed ambiguous. But not all GPs are aware of that. My GP told me my celiac bloodwork was negative. But I went gluten free anyway and felt better. It wasn't until I saw a gastroenterologist a couple of months later that I learned that because my overall IgA was low, the celiac panel's "negative" result is not a reliable indicator. So now I have scheduled an endoscopy to get a biopsy of my small intestine. I'm back on gluten until the biopsy, and guess what, I'm feeling lousy again.

[Islandgirl]

You're doing exactly what I don't want to do, but understand why you are doing it. Is ther such a thing as IBS w/an intolerance to Gluten? God knows I don't want to repeat that the rest of my life!

I told my hubby @ lunch my plans - keep the follow up appointment & go back on Gluten after the vacation the 1st of July & see what happens. Thank you for the IGA thing. I will ask and see where that leads me. Anyone out there get diagnosed by diet change alone? Say, by an allergist etc?????

[Fiddle-Faddle]

My IgG was the only thing that was high--and it was off the charts (and I had been gluten-free for 4 weeks). But the doctor called that a negative result.

My endocrinologist, on the other hand, said it was a clear diagnosis of celiac.

One thing to keep in mind is that if you are officially diagnosed with celiac, insurance companies (health and life) can--and have--use that as an excuse to deny coverage.

[Fiddle-Faddle]

You're doing exactly what I don't want to do, but understand why you are doing it. Is ther such a thing as IBS w/an intolerance to Gluten? God knows I don't want to repeat that the rest of my life!

I told my hubby @ lunch my plans - keep the follow up appointment & go back on Gluten after the vacation the 1st of July & see what happens. Thank you for the IGA thing. I will ask and see where that leads me. Anyone out there get diagnosed by diet change alone? Say, by an allergist etc?????

Allergists don't seem to know much about celiac, as it's not technically an allergy.

If you keep your appointent with this ignorant, narrow-minded doctor, you might want to emphasize to him that what you are seeking is health. Do you really care what he calls it if either way you shouldn't eat gluten?

You wouldn't wait until a peanut-allergic person goes into anaphylactic shock before calling them allergic, would you? Well, it's the same with gluten. call it whatever you want. Call it celiac--it probably is anyway. If you are intolerant to gluten and continue to eat it, you will eventually develop intestinal and/or other damage.

[Jestgar]

Anyone out there get diagnosed by diet change alone? Say, by an allergist etc?????

Last year, after I went gluten-free, I sent a letter to my PCP describing the changes that had taken place. This year (4 days ago) she said "You've lost weight, your blood pressure's down, tell me what else has improved" She made notes on my chart, approved my excessive amounts of vitamin D and suggested I add zinc. She then told me she's been using me as an example to people she feels would improve their health by not eating gluten .

Have I been diagnosed?

[Nancym]

You're doing exactly what I don't want to do, but understand why you are doing it. Is ther such a thing as IBS w/an intolerance to Gluten? God knows I don't want to repeat that the rest of my life!

I told my hubby @ lunch my plans - keep the follow up appointment & go back on Gluten after the vacation the 1st of July & see what happens. Thank you for the IGA thing. I will ask and see where that leads me. Anyone out there get diagnosed by diet change alone? Say, by an allergist etc?????

It doesn't matter what the cause is people aren't going to understand either way. It's just best to keep the explanation short and simple and in terms people can understand. You tell them it is an allergy and it makes you extremely sick if you eat it. It isn't exactly accurate but people sort of understand that allergies are not to be messed wtih.

Whether there's a piece of paper in some doctor's office with your name and "celiac" written on it really doesn't impact how you're treated by other people or how well you'll follow the diet or anything. It all comes down to doing the hard work of staying off the gluten and making sure other people who don't understand, and probably never will, don't unwittngly sabatoge your efforts.

[jdp364]

You're doing exactly what I don't want to do, but understand why you are doing it. Is ther such a thing as IBS w/an intolerance to Gluten? God knows I don't want to repeat that the rest of my life!

I told my hubby @ lunch my plans - keep the follow up appointment & go back on Gluten after the vacation the 1st of July & see what happens. Thank you for the IGA thing. I will ask and see where that leads me. Anyone out there get diagnosed by diet change alone? Say, by an allergist etc?????

FYI, the main reason I am going with the endoscopy is because my symptoms are not classic celiac symptoms (my main complaint is gas/abdominal cramps and I have no elimination issues other than mild constipation). My symptoms do seem to improve when I'm off gluten, but they don't go away entirely. If there is any doubt that I have celiac, and it appears that there is based on my symptoms and ambiguous bloodwork, I want to turn over every stone in finding out for sure.

Oh, and I dunno about this IBS w/intolerance to gluten stuff. Sounds like BS to me.

[tabdegner]

I could have written your posts EXACTLY. I do not have an official diagnosis, either. You can read my signature and see all of my history -- the latest is another negative blood panel -- surprise, surprise...

BUT, 1 month ago I went gluten free and have NEVER felt better. ALL of my symptoms were GONE in a week. And this is after very severe symptoms for a LONG time. And I'm STILL doing great after a month.

I, too, would like to challenge it and go back on gluten and see what happens. But I am at a very stressful point in my life and don't want to get sick now. Go figure -- my GI doctor told me my problems was stress -- this was during a very peaceful time in life. Then my DH lost his job 1 week after I went gluten free and we may be moving out of state. And guess what -- with all the stress, I FEEL GREAT. DON'T tell me I have stress related IBS.

At first I really wanted a diagnosis. But after feeling so good this past month, I've realized -- it really doesn't matter. I feel good, and THAT'S what matters.

[ravenwoodglass]

You're doing exactly what I don't want to do, but understand why you are doing it. Is ther such a thing as IBS w/an intolerance to Gluten? God knows I don't want to repeat that the rest of my life!

I told my hubby @ lunch my plans - keep the follow up appointment & go back on Gluten after the vacation the 1st of July & see what happens. Thank you for the IGA thing. I will ask and see where that leads me. Anyone out there get diagnosed by diet change alone? Say, by an allergist etc?????

I did. And that little old man saved my life. It was hard to find an allergist who would deal with food, but I did find one. I had been blood tested repeatedly and always came back negative. My GI never even thought of celiac, he did a colonoscopy and told me to eat more fiber. I was severely impacted and only saw an allergist because my PT insisted. He skin tested me then put me on an elimination diet. Wheat was the 3rd food I added back in. 3 days after I added it back in we had an answer. He then referred me to a GI who after my being gluten-free for 3 months, and feeling better than I had since childhood, wanted me to do a gluten challenge. That challenge was the first time I had serious GI bleeding. I was to sick to do the endo and he diagnosed me officially without one. Then they finally tested my teenage children who had problems for years. They did show up in blood work.

[pedro]

Hi and welcome, you will find a refuge here. This site we can call also home.

You story sounds like most of us.

Don't let your doctor discurage you.

I told my doctor: Doctors knows best, BUT I know my body better than anyone else, and that includes the doctors also.

Welcome and best of lucks to you.

[Karen B.]

FYI, the main reason I am going with the endoscopy is because my symptoms are not classic celiac symptoms (my main complaint is gas/abdominal cramps and I have no elimination issues other than mild constipation). My symptoms do seem to improve when I'm off gluten, but they don't go away entirely. If there is any doubt that I have celiac, and it appears that there is based on my symptoms and ambiguous bloodwork, I want to turn over every stone in finding out for sure.

Oh, and I dunno about this IBS w/intolerance to gluten stuff. Sounds like BS to me.

I'm really glad I went with the endoscopy because I didn't have the typical Celiac symptoms. Occasional tummy troubles but I'm a very adventurous eater so it didn't seem odd to have an upset after eating spicy foods or a different ethnic dish. I'm overweight and just this year, it's started coming down in small bits here and there. I'm thrilled because I never could lose weight before. My only real symptom was anemia and sciatica and my Internist apparently hadn't seen an asymptomatic Celiac before. Of course, my doc told me she thought it might be colon cancer, so Celiac was actually good news! :-)