Confusing Doctor

[NewNicole]

Hi my name is Nicole. I have had many symptoms throughout my life and I have been told so many things along the way that I am leary of all doctors. I was told I have an ulcer.....the endoscope didn't find that. Then a few years later I was told I had gall stones and needed my gall bladder out. I didn't do that and surprise I don't have anything wrong with my gallbladder. That was confirmed with a disida scan and many ultra sounds. Then I was told I had IBS. That didn't seem to fit. I came into the doctors office in severe pain looking literally like I was 9 months pregnant. Infact I had 3 different nurses argue with me one that fact. I have 3 children and I assured them I was not pregnant. They checked and surprise I am not pregnant. Plus the bloating and pain was there for 3 months prior to seeing them. So I went to a GI who did a ct scan, an xray, bood work, the disida scan, a hydrogen breath test, and an edoscope. So the blood work came back with my iron low, a slightly elevated SED rate. My thyroid levels are slightly elevated to 3.8 but most people don't classify until over 5. They found arthitis in my hip and my IGA came back positive but the other 2 were negative. The endoscope results showed only a "mild increase in intraepithelial lymphocytes". And the hydrogen breath test came back positive. After the endoscope the doctor told my husband I had celiac and then when the results came back his nurse called and said I had latent stage celiac. Then when I went to see the doctor again he told me I had IBS but then recanted and said I had celiac. Now I am not confident in his opinion because he wavered on his answer and after 7 months straight I still look 8 months pregnant. Here are my symptoms can anyone tell me if they have expereinced any of this and if they believe I have the disease.....

symptoms..

joint pain

headaches daily

severe abdominal pain (sharp intense in middle to upper abdomin)

severe bloating that increases when I eat......instantly not after an hour

tired

brain fog

pale almost white, floating stool

sometimes loose stool but not associated with when the bloating starts nor does the pain stop when I have a bowel movement

white marks on teeth in fact one tooth just exploded without any known cavity

weight gain (try to eat to stop the pain)

extreme nausea

bloating is there constinently but gets more intense while I am eating. Been bloated for 7 months straight

Thank you and I hope someone out there can help.

Nicole

[ravenwoodglass]

You sure sound like one of the family and the increase in intraepithelial lymphocytes is a common finding with celiac. It sounds like the doctor saw changes during the endo that really made him pretty certain with your symptoms that you are celiac but when the path report came back it wasn't as clear as he hoped. Your doctor did confirm in the end that you have celiac, go with it, go gluten free and start healing. You may be surprised how much it helps a lot of stuff, I know I was. It can be hard at first but you are in a great place to learn. Ask any questions you need to and read as much as you can. Be sure that all your first degree relatives get tested, whether they think they have symptoms or not.

[curlyfries]

and after 7 months straight I still look 8 months pregnant. Here are my symptoms can anyone tell me if they have expereinced any of this and if they believe I have the disease.....

Does this mean you've been gluten-free for 7 months? Do you continue to have all your symptoms? If so, you may need to eliminate other things as well, such as dairy. Or.....you may not be as gluten-free as you think. Also, I have not had a problem with the bloating, but from what I have read on this forum, it can take quite a while for that to diminish, even after all other symptoms are gone.

[Fiddle-Faddle]

I have the same reaction as the above 2 posters:

1)Yes, you sound like one of us, but

2)If you got the diagnosis 7 months ago, have you been gluten-free for those 7 months?

If so, and you are experiencing NO relief from your symptoms, that doesn't necessarily mean you DON'T have celiac, but there is likely something else going on, either in addition to celiac, or possibly without celiac.

If you have NOT been gluten-free, then we are here to help you get started in whatever way you need! Ask away! Getting started is the hardest part, but once you do, it is SO much easier than you'd think, especially with everyone here who has figured out all the tricks. And you'll find that staying gluten-free is also not hard, because you will probably feel SO much better, you'll not want to go back.

Welcome aboard.

[NewNicole]

I my symptoms became worse in June with the bloating. I went into the doctors in september and after all the tests that was in Novmeber. I was gluten free for 4 weeks when he was testing the theory, after the endoscope before the visit. Then when I returned the diet had helped some of the symptoms but not completely. He said to keep going gluten-free but with his wishywashy attitude I thought I should continue to eat normally so at some point another doctor could see the issues. Now that I am eating gluten I am still boated although a lot of the intense pain has been dimishing. Does celiac come and go. Can the symptoms get better even when you are eating the gluten?

[nasalady]

Symptoms can come and go when you're eating gluten, but if you have celiac disease, the gluten will cause damage to your intestines regardless of whether you have symptoms or not. As Fiddle-Faddle said, it does sound like you may have more than one thing going on.

Just out of curiosity, have you had your liver functions tested lately? If so, what were your AST and ALT numbers?

Feel better soon!

JoAnn

[NewNicole]

No they haven't checked the liver. why do you ask?

[nasalady]

No they haven't checked the liver. why do you ask?

I have 6 different autoimmune diseases, including autoimmune hepatitis (AIH), which of course means that my immune system is trying to kill my liver; right before I was diagnosed with AIH my symptoms included:

upper abdominal pain, twinges around the liver region

bloating/swelling in upper abdomen

exhaustion

brain fog

pale stool

Many of these symptoms overlap with other medical problems I have, such as fibromyalgia and celiac disease, but pale stool is a classic sign that the liver is not well. You may want to ask your doctor to run a liver panel.

Just a suggestion of course; I hope that there's nothing wrong with your liver at all!

Take care,

JoAnn

[Fiddle-Faddle]

Pale stool can be a symptom of celiac OR hepatitis. And, of course, it is possible to have both.

Most of us here thought that we were gluten-free right after diagnosis--and then found out than many of the things we were eating contained "hidden" gluten, so we weren't as gluten-free as we'd thought!

Just in case you have had the same difficulties as we did, here is a list of foods that you wouldn't think contain gluten--but do:

SOY SAUCE (most brands contain wheat as second ingredient!)

RICE KRISPIES AND CORN FLAKES (contains barley malt=gluten)

SOME DELI COLD-CUTS

ROTISSERIE CHICKENS (many--but not all--marinated in gluteny soy sauce)

"PLAIN" MEAT, CHICKEN, AND FISH ENTREES AT RESTAURANTS (usually dredged in flour or marinated in wheat-containing marinade before cooking--also often served with sauces thickened with flour)

"LITE" ICE CREAMS, SOME "LITE" SOUR CREAMS/CREAM CHEESES (thickened with wheat starch)

DELI TUNA/CHICKEN SALADS (contain bread crumbs as filler)

SPELT (spelt IS wheat, no matter what the health food store clerk says. It has less gluten than modern wheat, but it still does have gluten.)

RICE DREAM BRAND RICE MILK (says gluten-free on label, but isn't.)

Good luck--hope that helps!

[NewNicole]

I will have to check more into the liver. Thank you. I checked on the pancreas thinking that could cause the stool issue also but they didn't seem to think that was a problem. Actually my doctor told me that the fact that my stool was almost white and floated was not an issue at all. So I will do some more research on the liver. Thank you.

I didn't realize that the rotisserie chicken was a problem. That is a little depressing. I do find eating this diet to me a challenge. It makes me have to cook a meal for my kids, a meal for my husband and now a meal for me. I really hate to cook in the first place. Really I hate cooking. I'm not sure if I am up for the challenge.

Another interesting point.....my brother has the same symptoms and he hasn't found out what the problem is. He does have lupus, psoriasis, and he has had hepatitis ( the medicine he had been given for the psoriasis made him have a low immunity and he got the hepatisis but is now fine.). So I am wondering if because he has already been diagnosed with an autoimmune disease if this helps confirm the celiac connection?

[Fiddle-Faddle]

May I suggest that you make ONE meal that everyone can eat? Gluten-free is perfectly healthy for everyone; gluten is not a necessary nutrient--in fact, it's NOT a nutrient!

What are your hubby's dietary restrictions? Maybe we can help you come up with easy-to-cook-but-still-yummy recipes. Many of us here have kids, so we know the challenge of coming up with foods the kids will eat!

Yes, sounds like a big celiac-autoimmune connection with your brother. Look up the symptoms of lupus--many of them overlap with celiac. Same with psoriasis and dermatitis herpetiformis (a subset of celiac, where there are possibly fewer or no intestinal symptoms, but major dermatological symptoms).

If your doctor says that white, floating stools are of no concern, he is an idiot (sorry, I just spent 5 minutes writing and deleting what I really think of him). Find another doctor!

[JRock]

I agree with Fiddle-Faddle - you've got to get a different doctor. Your doctor sounds flaky and you need someone dependable and honest when dealing with such a life-altering diagnosis. If you do have celiac, you do need to make sure that you remove ALL gluten from your diet (and hopefully your family will be supportive and deal with gluten-free dinners - it's for your health!).

Jen

[Sammie Alma]

Hi my name is Nicole. I have had many symptoms throughout my life and I have been told so many things along the way that I am leary of all doctors. I was told I have an ulcer.....the endoscope didn't find that. Then a few years later I was told I had gall stones and needed my gall bladder out. I didn't do that and surprise I don't have anything wrong with my gallbladder. That was confirmed with a disida scan and many ultra sounds. Then I was told I had IBS. That didn't seem to fit. I came into the doctors office in severe pain looking literally like I was 9 months pregnant. Infact I had 3 different nurses argue with me one that fact. I have 3 children and I assured them I was not pregnant. They checked and surprise I am not pregnant. Plus the bloating and pain was there for 3 months prior to seeing them. So I went to a GI who did a ct scan, an xray, bood work, the disida scan, a hydrogen breath test, and an edoscope. So the blood work came back with my iron low, a slightly elevated SED rate. My thyroid levels are slightly elevated to 3.8 but most people don't classify until over 5. They found arthitis in my hip and my IGA came back positive but the other 2 were negative. The endoscope results showed only a "mild increase in intraepithelial lymphocytes". And the hydrogen breath test came back positive. After the endoscope the doctor told my husband I had celiac and then when the results came back his nurse called and said I had latent stage celiac. Then when I went to see the doctor again he told me I had IBS but then recanted and said I had celiac. Now I am not confident in his opinion because he wavered on his answer and after 7 months straight I still look 8 months pregnant. Here are my symptoms can anyone tell me if they have expereinced any of this and if they believe I have the disease.....

symptoms..

joint pain

headaches daily

severe abdominal pain (sharp intense in middle to upper abdomin)

severe bloating that increases when I eat......instantly not after an hour

tired

brain fog

pale almost white, floating stool

sometimes loose stool but not associated with when the bloating starts nor does the pain stop when I have a bowel movement

white marks on teeth in fact one tooth just exploded without any known cavity

weight gain (try to eat to stop the pain)

extreme nausea

bloating is there constinently but gets more intense while I am eating. Been bloated for 7 months straight

Thank you and I hope someone out there can help.

Nicole

[Sammie Alma]

Hi! My name is Sammie and I couldn't help but answer your letter. I Don't pretend to know if in fact that you do have celiac? but from all that I have read which is a lot since I found out that I have all the signs of celiac myself. You didn't say if it is in your family? But then I also don't know, I am the last chance in my side of the family to find out for sure if there is Celiac Disease in our genes.

My doctor concufsed me with all kinds of test and was vauge about why, one time it was for heart trouble and the next it was gall bladder, IBS, and the list goes on. I read that most of us with Celiac Disease had to find out from someone else and I found a piece in the Doctors Cloumn about someone that was told that she had C.D. and It gave information on some of the symtoms and it sounded just like me, I remembered that I could get the information online, so I started reading. Like you I am sure that I have C.D. and I am going to get my biopsy to prove it out for the rest of the family. I have grown childern and Grandchildern. It is important that you get this checkout all the way for your chilerns sake. My symptoms were much like your, but I am going on 35year's of a lot of quess work.

Depression, Chronic Fatigue, Aches and pains in my joints, my hips and back hurt sometimes so bad that I just stayed in bed. The stomache gramps were so bad that they tore holes in my stomache lining and I had to have sugery on 15 of them. So yes I know how painful those cramps can be. My moods changed like night and day only a lot more often. I can be happy one minute and sick and mad the next. Constipation, Weight agin, 65lb that right now won't move. Dry and coarse skin and hair. My finger nails are a mess and they chip and break al the time. Muscle weakness all the time. My vision is awful, my eyes hurt and itch, I had a bought with shingles and I got a shot for them, now I have the syptoms al the time but they don't break out. So I would say read all you can and stand up for yourselfe. Hope I get to hear how it turns out for you. God Bless Sammie

[NewNicole]

Thank you for all the help. Especially fiddle faddle who took five minutes to make sure the response was politically correct. I LOVE that. I have many responses myself for my doctor but thought maybe I was being fussy. I am going to try another doctor, hope I can find one, and see what his response is. Oh and to the person who asked me what my husbands dietary needs are I must say.....taste. he needs taste and that was lacking in the gluten free products. LOL. Thank you again.

[Fiddle-Faddle]

Oh and to the person who asked me what my husbands dietary needs are I must say.....taste. he needs taste and that was lacking in the gluten free products. LOL. Thank you again.

Aha!

That's where we come in.

We've all been through this ourselves, so we know how to get around the styrofoam-and-cardboard taste of the pre-made gluten-free products.

Tell us what he wants to eat, and we'll all come up with recipes and/or good brand names and/or how to doctor up the not-so-good.

For snacks, the easiest thing is to get "normal" stuff that just happens to be gluten-free, like Fritos and Ghirardeli chocolate chips (3 pound bags available at Costco and Sam's Club for less than Nestle's costs at the grocery). Homemade gluten-free chocolate chip cookies are EASY, fast, and just as good as Tollhouse.

[mamabear]

Ok, bash me if you want, but I have to commend the guy for pursuing the EGD with 1 of 3 positive antibodies. Around here, you practically have to beg the GI to biopsy in that situation. And no one is pointing at the pathologist?? There is more than one culprit in the lack of celiac detection in the USA. If the pathologists do not interpret the slides correctly/liberally..and give a hint to the ordering doc that increased intraepithelial lymphocytosis could be suggestive of celiac disease......the lesser cognizant GI's will miss the boat. I don't understand why you were not informed that your results are highly suggestive of celiac disease and that you would be encouraged to go gluten-free. Seems like a certain amount of waffling on his part( the last opinion was celiac,right?), but celiac is rarely diagnosed 100% certain for many of us. Based on your symptoms and signs,I do believe you have it .

[NewNicole]

I have to say first I must know the secret ingredient for the ccokies because my sister-in-law (God bless her) cooked 3 batches trying to make cookies that resembled cookies. The taste was alright but the fact that they turned into sand upon contact and then when mixed with water it turned into mortar made me decide that cookies were just not in my future (not that that is a problem really). She used arrowhead mills all purpose baking mix. It just isn't the same. My real problem was lunch. I always eat a sandwich and that requires bread. I tried corn tortilla but that was working so well. So any help there would be much appreciated.

As for the doctor thing......the report came back ( I got a copy) saying that it can not confirm nor can it rule out celiac. And he did the EDG because along with the symptoms and the one blood test I also had low iron binding, not just the iron level but the binding. Plus my SED rate was elevated indicating inflamation and I have slightly higher thyroid levels. He told me that with all this and the arthitis they found that it indicated an autoimmune disease and he thought it was celiac. Then when the results came back his nurse called and told me that I had early celiac disease. But when I went to see him he came into the room telling me I had IBS then changed his mind back to celiac. So really the report isn't the issue as much as he is giving me many different answers. That's my concern.

[lizard00]

First off, I agree with others. Find a new doctor. This guy sounds like he doesn't know what's up.

IMO, IBS is a catch all term. If you have undiagnosed celiac, you probably do have IBS. Your bowels are irritated... but WHAT is causing them to be irritated? Under normal circumstances, a person's bowels should not be chronically irritated. You definitely sound like you are one of us. As for the bloating, I'm not sure if someone has asked this already, but have you tried cutting out dairy and soy? These three are commonly problematic for celiac patients.

As for the food prep, it seems hard at first. But don't cook three meals. That is INSANITY! I do not cook gluten containing foods... ever. My husband and my son eat bread, and that's about it. Occasionally, they'll get pizza. And we eat VERY well. Last night, we had steak, spinach and mushrooms and cut up baked sweet potatoes. It was stuff I made before, no big deal. You'll be surprised at how much of your food was probably already gluten free to begin with. Just be sure to read your spices to make sure there's no hidden gluten, but there's really no reason that your food shoud be tasteless just because it's glutenless!

Baking is a bit more tricky, but you're guaranteed a few laughs over some of the things that come out of your oven. You'll find that most of us recommend a blend of flours, instead of just one. I used sorghum, potato starch and tapioca mixed together. Others have different blends. I have found though, that the premade gluten-free stuff is far below what I can make at home. It's worth it to bake occasionally.

[Fiddle-Faddle]

For chocolate chip cookies--these are THE BEST!!!

Open Original Shared Link

The brown rice flour mix they call for is listed here: Open Original Shared Link

You can use half "Bob's Red Mill" brown rice flour and half cheap white rice flour mix instead of the "super-finely ground brown rice flour mix" they call for--it's really hard to find that super-fine grind, and when you do, it's awfully expensive.

For sandwiches, buy the cookbook listed on the website, Gluten-Free Baking Classics by Annalise Roberts. THere are a bunch of great bread recipes. Or go to www.betterbatter.org, order their EXCELLENT gluten-free flour, and use the superb recipes on their site. I make their challah in my bread machine often.

There is also a flax skillet bread recipe floating around this website somewhere. It makes fabulous sandwich buns!

Corn tortillas work really well as wraps if you heat them (10 seconds in a microwave or 1 minute on each side in a frying pan) before wrapping, and if you spread with butter, cream cheese, or some kind of sauce, and line with lettuce before adding your fillin.