Worried And Wondering!

[Guest greengirl]

I am new to the site, and just started a gluten free diet 2 weeks ago. I have gleaned so much information from all of you and I am so grateful. I would really appreciate any insight you have for me, because I have not been diagnosed with Celiac, and am unsure whether I'm barking up the wrong tree, so to speak.

Some background info (thank you for taking the time to read this!): As long as I can remember I've had IBS (mostly diarrhea) and have often been anemic. I've gone through periods where I've lost a lot of weight and just generally felt unwell. In 2004 I started having vomiting attacks and abdominal pain. Tests determined that my gallbladder was only functioning at 7%. I was thrilled because I thought that removing the gallbladder would solve my problems. However, a month after my surgery the vomiting attacks started again. It felt like the flu or food poisoning, but I had no fever and I was usually fine by the next day. The attacks would come every couple months, and although I did mention it to my primary care doctor (who didn't seem concerned) and my gallbladder surgeon (also not concerned), it was pretty easy to ignore it until the next attack.

This past summer, though, I started having periods of excessive gas, and pretty persistent abdominal pain that was hard to pinpoint. Also, it seemed my diarrhea was getting worse and I was again anemic. I started seeing a gastroenterologist in December, who did bloodwork, a colonoscopy, an endoscopy, and a small bowel barium test. He said that my blood test was neg. for celiac (I haven't seen copies of it so I don't know the numbers or the kind of test he gave me). The colonoscopy was fine, but the endoscopy and biopsy showed inflammation in the stomach and intestines with eosinophils (white blood cells) present. The small barium test showed the folds of the intestines to be 25% stretched out, I guess (maybe from the inflammation?) I don't know the term he used. He never mentioned the state of the villi.

From what I understand, the inflammation with eosinophils is indicative of a food allergy or parasite (stool test was negative for parasites). The doctor wanted to prescribe steroids, but after I was reluctant to go this route we agreed that I would first try the gluten free diet (even though he insists that it's not Celiac because of the bloodwork). I've been on it for 2 weeks and the first week or so I was feeling great. Even my watery diarrhea cleared up almost immediately. The second week some diarrhea did return, although generally I felt better than before I started the diet. I may have inadvertently eaten some gluten, even though I've tried to be really careful.

However, a couple nights ago, I ordered a plain cappuccino at a coffeshop (this should have been gluten free, right?) and by the time I was done drinking it I started to have abdominal cramping that got worse through the night and by morning I was vomiting and unable to keep down liquids. The pain continued through that day and the next night in waves and my abdomen would feel hard as the pain would come. I've never had pain this severe before. I'm finally feeling a little better today, and I'm wondering if this reaction could be from the milk. I know many of you have said that lactose intolerance can be a problem (and I've noticed this in myself) but this reaction seems so extreme.

Have any of you had experience with pain like this?

Does it sound like my symptoms could be consistent with Celiac?

Have any of you had biopsies that showed inflammation and white blood cells (eosinophils) present in the stomach and/or intestines?

I will continue the gluten free diet because I was feeling great at first and I'm scheduled for a capsule endoscopy in 2 weeks (I'll swallow a camera that will take 50,000 pictures of my digestive tract!), but I feel worried and would love to hear from some of you celiac experts.

[tiffjake]

Wow, what a horrible thing to go through! I am so sorry to hear about your health. I don't know what I can say to help (because I didn't have anything like that) is that I have read that the biopsy and pictures need to be of someone who is eating gluten. So if you DO have celiac and you WANT it to show up on the pictures, you might want to rethink going gluten free before the procedure. DON'T GET ME WRONG, I AM NOT SAYING THAT THE PROCEDURE IS MORE IMPORTANT THAN YOUR HEALTH, AND IF YOU ARE FEELING BETTER BEING GLUTEN FREE, THEN YOU SHOULD NOTE THAT TO THE DOCTOR, BUT THEY MAY NOT SEE THE DAMAGE THAT OCCURED IF YOU HAVE ALREADY STARTED TO HEAL BECAUSE OF GOING GLUTEN FREE.

[mommida]

Tiffjake has told you the same thing I would have.

If you are going through with the testing you have to damage from gluten for any type of results.

You past history has many symptoms of Celiac. The anemia, gall bladder problems, and GI distress are all symptoms of Celiac or a gluten intolerance.

If your test results are negative, you can still try the gluten free diet. I don't feel that the testing is that accurate. If you feel better gluten free, do it. Your body's reaction is more telling than any test.

Good luck with the endoscopy, and keep us posted.

Laura

[teebs in WV]

My understanding is that everyone is different, but I was on a gluten-free diet for about 3 weeks when I had my endoscopy and biopsy. I was not very knowledgeable about cross-contamination, so I don't know how much accidental gluten that I ingested during that time. Anyway, the damage from this disease was still apparent. I think it can take months and even years for full healing to take place.

There are many people on this forum that are well-versed in this. I am sure you will learn alot more from others (as will I!).

Good luck to you,

[johanna]

Coffee is a very inflammatory food. It's not recommended for people with bladder or stomach irritation, so maybe the cappuccino just really irritated your already irritated system. Also, it sounds like you could have an eosinophilic allergic disease of the digestive tract that is aggravated by food and/or environmental allergens. Have you done allergy testing? RAST testing showed nothing for me on the foods, but another doctor did the Thabest test for foods, which is more sensitive. The results seem accurate for me. Not very many doctors do this. I'm going to do sublingual immunotherapy (same idea as allergy shots but under the tongue) which is used a lot in Europe but not really approved here. I'm going that route b/c based on the reading I've done, it seems better suited for my medical history.

BTW, I'm new to gluten intolerance, but when I developed digestive problems about 9 years ago, changing my diet to avoid my allergenic foods cleared up my 6-month diarrhea within 3 days. I had another really bad flare-up of weird symptoms and food reactions about a year ago, and got through a really tough time by rotating the foods I ate (not the strict rotation diet, but with variety at least), avoiding all foods that seemed irritating, such as spices or coffee, and eventually started using two probiotics (culturelle and vsl3) that really worked wonders for me.

[Guest greengirl]

Thank you for your posts!

I actually did have the endoscopy BEFORE I started the gluten free diet and the dr. said I had inflammation with eosinophils present (white blood cells). This would indicate an auto-immune response, but to what I don't know.

I guess I'm just wondering if a Celiac auto-immune response to gluten could include eosinophils and inflammation in the intestine or would there just be damage to the villi without signs of inflammation? Probably there's not a yes or no answer to this otherwise diagnosis would be more cut and dry. :-)

A diagnosis would be nice, but you're right that if the gluten free is helping (which it seems to be) then that's the most important thing. This cappuccino incident just threw me for a loop! It sounds like cramping and vomiting from milk is not a typical lactose intolerant reaction after starting a gluten free diet.

Thank you, Johanna, for the food allergy testing information. That might be something that I'll do depending on the results of the capsule endoscopy in a couple weeks. What kind of doctor did you see for the Thabest test?

Christine

[aikiducky]

Christine, inflammation can be a sign of celiac. And the other thought I had - there's no reason the cappucino couldn't have been cross-contaminated, with bread crumbs or cookie crumbs for example. Many people find that after going gluten free, they start to react very strongly even to minuscule amounts of gluten.

Pauliina

[Guest greengirl]

Christine, inflammation can be a sign of celiac. And the other thought I had - there's no reason the cappucino couldn't have been cross-contaminated, with bread crumbs or cookie crumbs for example. Many people find that after going gluten free, they start to react very strongly even to minuscule amounts of gluten.

Pauliina

Thanks, Paulina. Not many people mention inflammation among symptoms, so I've been wondering if my biopsy was atypical of Celiac.

That's a good thought about the bread crumbs. Also, I wonder if the frothing nozzle could have been contaminated by the flavored coffees or syrups from other orders.

It is so hard to avoid all traces of gluten! Half of the gluten free items in the stores are produced in a factory that processes wheat. I'm afraid to eat those, especially now when I've just started the diet, because I need to figure out for sure if this is helping me. Do you (and others) just expect to get sick every so often from accidental ingestion even on an established gluten-free diet? Or do you get pretty good at avoiding it completely?

Christine

[CMCM]

Your reaction to the cappuccino is very suspicious. The same thing has happened to me....but it doesn't happen every single time. I finally got the Enterolab tests and found, not surprisingly, that I had both the celiac gene AND a second one for gluten sensitivity. The surprise in my testing was that I was also casein sensitive. The casein sensitivity can cause the same intestinal damage as gluten sensitivity or celiac. I actually have always had more severe and more obvious symptoms from dairy than I do from gluten. But with both of them, the reactions are not the same every time. Sometimes I can get away with eating either or both of them with little more than bloating and some gas. On other occasions the reaction has been terrible...ranging from horrible pain, cramps and D, to burning pain above my stomach, to extreme nausea and dizziness, body aches, asthma symptoms to list a few. I have never been able to pinpoint exactly what caused what.....I am sort of thinking that perhaps I reach "overload" states where over a period of days I have eaten more and more of various things, and eventually I'd get a reaction that was really strong.

In any case, your cappuccino reaction is strongly suggestive of casein sensitivity. This frequently occurs with gluten sensitivity, in addition to lactose intolerance (which is a different thiing). You could actually end up with BOTH casein sensitivity AND lactose intolerance, as well as gluten sensitivity.

I'd say you really need to know about both gluten and casein. I personally do NOT trust blood tests all that much...too many variables including doctor ignorance. I put a lot more trust in the Enterolab stool tests because the test material comes right from the gut where all the "action" starts. The stool test can tell you about gluten sensitivity AND casein sensitivity, even if you haven't had gluten for awhile. It can show if antibody reactions have been occurring. It can tell if you have malabsorption in your intestines. And the gene test which is included can show you if you have any of the suspect gluten or celiac genes. This is a lot of information, it's non-invasive, and compared to what you can get into with various blood tests and a biopsy etc., the Enterolab test is a real bargain.

This is all something you can do without being helplessly dependent on doctors. After you see your Enterolab results, you can alter your diet for a month. If you see positive changes, you have your answer. You could spend months and months and thousands of dollars with doctors and still end up at the exact same place and exact same prescription: Don't eat gluten or dairy.

On the other hand, if diet makes no difference after a month or two, then you will know that you need to go back to the doctor so he/she can pursue other possibilities to explain your symptoms. My bet, however, is that this would not be necessary. The diet will most likely eliminate or greatly reduce your symptoms is that short test period of a month or two.

[jenvan]

You have many symptoms in line with Celiac, and if the diet gives you positive results, I would stick with it. Cappuccino--This may not have anything to do with Celiac or gluten. I can not tolerate caffeine-gives me bad abdominal pain. It could also be related to milk--which is another very common food allergy/intolerance. Have you noticed any issues with dairy before?

[aikiducky]

Do you (and others) just expect to get sick every so often from accidental ingestion even on an established gluten-free diet? Or do you get pretty good at avoiding it completely?

I've been doing pretty well lately (I'm gluten free for about 16 months now) but especially in the beginning I'd get glutened quite often. There's definitely a learning curve! Your safest bet is to stick to natural stuff like fresh fruits and veggies, meat and fish, and prepare your food yourself, at least in the beginning.

Pauliina

[Guest greengirl]

Your reaction to the cappuccino is very suspicious. The same thing has happened to me....but it doesn't happen every single time. I finally got the Enterolab tests and found, not surprisingly, that I had both the celiac gene AND a second one for gluten sensitivity. The surprise in my testing was that I was also casein sensitive. The casein sensitivity can cause the same intestinal damage as gluten sensitivity or celiac. I actually have always had more severe and more obvious symptoms from dairy than I do from gluten. But with both of them, the reactions are not the same every time. Sometimes I can get away with eating either or both of them with little more than bloating and some gas. On other occasions the reaction has been terrible...ranging from horrible pain, cramps and D, to burning pain above my stomach, to extreme nausea and dizziness, body aches, asthma symptoms to list a few. I have never been able to pinpoint exactly what caused what.....I am sort of thinking that perhaps I reach "overload" states where over a period of days I have eaten more and more of various things, and eventually I'd get a reaction that was really strong.

In any case, your cappuccino reaction is strongly suggestive of casein sensitivity. This frequently occurs with gluten sensitivity, in addition to lactose intolerance (which is a different thiing). You could actually end up with BOTH casein sensitivity AND lactose intolerance, as well as gluten sensitivity.

I'd say you really need to know about both gluten and casein. I personally do NOT trust blood tests all that much...too many variables including doctor ignorance. I put a lot more trust in the Enterolab stool tests because the test material comes right from the gut where all the "action" starts. The stool test can tell you about gluten sensitivity AND casein sensitivity, even if you haven't had gluten for awhile. It can show if antibody reactions have been occurring. It can tell if you have malabsorption in your intestines. And the gene test which is included can show you if you have any of the suspect gluten or celiac genes. This is a lot of information, it's non-invasive, and compared to what you can get into with various blood tests and a biopsy etc., the Enterolab test is a real bargain.

This is all something you can do without being helplessly dependent on doctors. After you see your Enterolab results, you can alter your diet for a month. If you see positive changes, you have your answer. You could spend months and months and thousands of dollars with doctors and still end up at the exact same place and exact same prescription: Don't eat gluten or dairy.

On the other hand, if diet makes no difference after a month or two, then you will know that you need to go back to the doctor so he/she can pursue other possibilities to explain your symptoms. My bet, however, is that this would not be necessary. The diet will most likely eliminate or greatly reduce your symptoms is that short test period of a month or two.

Thanks for all the info! It doesn't happen to me every time either. I usually drink one cappuccino in the morning (from our own machine) and have no problem. Sometimes if I have more than one I feel some

stomach gurgling/bloating but just thought I was a bit lactose intolerant. Never have I had the extreme abdominal pain like I had from the coffee shop cappuccino.

Your description of "overload" is exactly what I was thinking about my vomiting attacks. There wouldn't be anything different or extreme about what I had eaten that day. It seemed that it built up over several weeks, because if it had been six or eight weeks since my last vomiting attack I would know that it was time for another one and sure enough it would happen.

I'm not familiar with Enterolab, although I've seen a lot of diagnoses on this site from them. I AM getting kind of fed up with my doctor because he dismisses my concerns about Celiac based on my one normal blood test. His first instinct is to prescribe steroids for the inflammation. So, maybe I will look into the Enterolab test (why don't the doctors use this method?) if it's not too costly. Although I'd probably pay anything for good health at this point!

In the meantime I will gather info about casein sensitivity. Thank you!

Christine

[Guest greengirl]

You have many symptoms in line with Celiac, and if the diet gives you positive results, I would stick with it. Cappuccino--This may not have anything to do with Celiac or gluten. I can not tolerate caffeine-gives me bad abdominal pain. It could also be related to milk--which is another very common food allergy/intolerance. Have you noticed any issues with dairy before?

I have had some issues with milk if I have more than a cup/day, like stomach gurgling, bloating, gas, but nothing like this latest incident. I haven't noticed any reaction if I drink black coffee or tea so I don't think it's the caffeine.

So far the gluten-free diet seems to be working so I'll stick with it, and I have been cutting out milk, as well, because I don't want a repeat of that terrible incident!

[CMCM]

Thanks for all the info! It doesn't happen to me every time either. I usually drink one cappuccino in the morning (from our own machine) and have no problem. Sometimes if I have more than one I feel some

stomach gurgling/bloating but just thought I was a bit lactose intolerant. Never have I had the extreme abdominal pain like I had from the coffee shop cappuccino.

Your description of "overload" is exactly what I was thinking about my vomiting attacks. There wouldn't be anything different or extreme about what I had eaten that day. It seemed that it built up over several weeks, because if it had been six or eight weeks since my last vomiting attack I would know that it was time for another one and sure enough it would happen.

I'm not familiar with Enterolab, although I've seen a lot of diagnoses on this site from them. I AM getting kind of fed up with my doctor because he dismisses my concerns about Celiac based on my one normal blood test. His first instinct is to prescribe steroids for the inflammation. So, maybe I will look into the Enterolab test (why don't the doctors use this method?) if it's not too costly. Although I'd probably pay anything for good health at this point!

In the meantime I will gather info about casein sensitivity. Thank you!

Christine

I make my own cappuccino too....I learned I do best on non-fat milk. I'm not sure why the shops would be different, but I don't do well with them either. Sometimes I got reactions almost the minute the coffee went down! I had to really limit it....I'm having a hard time with the idea of giving it up entirely. But I bought some very small cappuccino cups...holds less than 1/2 c. I think, and I limit myself to one of those, and not every day, either. After finding out about my casein sensitivity I apparently should give it all up, and I mostly have anyway, but I still have things sporadically. Just not daily. I also know it's not the caffeine because I drank straight coffee for awhile with no problem, except I just don't like it. Tea, which I drink most of the time, is no problem at all.

Go to www.enterolab.com and read all the info on the site. There's a lot of information. The fact that the medical community is not knowledgeable about enterolab is typical. The doctor who runs enterolab looks very legit...he's been doing these tests for 6 years now and has apparently compiled lots of data, and is going to publish study information, but hasn't yet. For the mainstream doctors, you have to publish and have peer reviews of your studies, and this can't usually occur quickly....for example, 4 years ago Dr. Fine might not have had enough data.

All profits from the testing go to the non-profit Intestinal Health Institute. If you go to the enterolab site, there is a lot of information, testimonials, info about the enterolab accreditation and so on. On this page link below a lot of questions are answered about why the stool test is better for diagnosis.

Open Original Shared Link

Since you obviously have issues with dairy, it would be useful for you to find out if you are casein sensitive. I always thought I was only lactose intolerant, and in fact, I didn't know about the casein thing. But these are two different things, apparently.

It's strange....apparently gluten damage can lead to lactose intolerance because of the flattened villi, but that must not always be true, something else is going on. My mom nearly died from undiagnosed celiac disease and her doctor said her intestinal wall was as smooth as a billiard ball....virtually no villa left. Yet, despite that, she has NEVER had issues with dairy!

For myself, I found out I was casein sensitive, and who knows if I am also lactose intolerant. I guess there's no way to find out since I'm now not supposed to have dairy anyway.

[Guest greengirl]

Thanks, Carole, for your post. It sounds like you react similarly to me. It's so hard to figure it all out, because it's not the same every time. Right now, I'm kind of afraid to drink milk, but if faced with the prospect of giving it up forever I know I'm going to have a really hard time - I just love my morning cappuccino. Since I got sick last week I've been drinking tea, but first thing in the morning it's not the same.

I probably will do the Enterolab testing, just to confirm that I'm not giving up gluten and milk for nothing. That's interesting about your mother being able to tolerate dairy despite the condition of her intestines. Maybe she doesn't have the casein sensitive gene and that's what makes the difference. I hope she's doing okay now.

My mom has early onset osteoporosis despite being a lifelong dairy drinker. She's never had intestinal problems but just recently she's had acid reflux and stomach inflammation. Of course, her blood test came back neg. for Celiac, but depending on my results with Enterolab, I think she should get tested, too. I know that osteoporosis can be a symptom of gluten intolerance and in her case she is way too young (late 50's at diagnosis) to have osteoporosis at such an advanced stage.

Christine

[CMCM]

Thanks, Carole, for your post. It sounds like you react similarly to me. It's so hard to figure it all out, because it's not the same every time. Right now, I'm kind of afraid to drink milk, but if faced with the prospect of giving it up forever I know I'm going to have a really hard time - I just love my morning cappuccino. Since I got sick last week I've been drinking tea, but first thing in the morning it's not the same.

I probably will do the Enterolab testing, just to confirm that I'm not giving up gluten and milk for nothing. That's interesting about your mother being able to tolerate dairy despite the condition of her intestines. Maybe she doesn't have the casein sensitive gene and that's what makes the difference. I hope she's doing okay now.

My mom has early onset osteoporosis despite being a lifelong dairy drinker. She's never had intestinal problems but just recently she's had acid reflux and stomach inflammation. Of course, her blood test came back neg. for Celiac, but depending on my results with Enterolab, I think she should get tested, too. I know that osteoporosis can be a symptom of gluten intolerance and in her case she is way too young (late 50's at diagnosis) to have osteoporosis at such an advanced stage.

Christine

That's interesting what you said about how maybe my mom does OK because she doesn't have the casein sensitivity like I do. I hadn't thought of that. She was in terrible shape when she finally got diagnosed 40 years ago,she nearly died, but from the moment she gave up gluten she continued to have dairy and never had problems with it.....when she had her biopsy the doctor said her intestinal wall was smooth as a billiard ball, too! So maybe the casein sensitivity is the key here. Bad luck for me, if so!

I'm 56, and I got a full test for osteoporosis maybe 4 or 5 years ago....and they said I had osteopenia, which is basically the beginnings of osteoporosis. I figured it was because my whole life I had not had a lot of dairy....because it upset my digestive system so much. But I've actually read that lots of dairy does not necessarily ensure strong bones or protect from osteoporosis...and in fact, from the reading I've done lately, I'm starting to think dairy might be detrimental for some people. And of course there is the connection with celiac, which I didn't know about 4 years ago.

It would be interesting for you to at least get a gene test....then you'd know whether or not you have either a celiac or a gluten sensitivity gene...and that in turn would tell you something about your mom. My mom has celiac disease, but my gene test came back with both the celiac related gene and one for gluten sensitivity, which I obviously got from my dad (who diedin 1989). This was a HUGE surprise, but I gave my mom the book Dangerous Grains, and she said she could now see all the little things my dad had that could definitely be right there in the symptom list for celiac/gluten sensitivity. My dad was a non smoker, non drinker, and only a bit overweight, but he was often fatigued without reason, had lots of sinus problems, some digestive stuff, high bp, and he got cancer.....and so who's to say his death wasn't caused by undiagnosed celiac/gluten sensitivity. He LOVED gluten things, and had the typical addition to grain related foods.

These gene tests and other tests are small investments to make in your future!

[Guest greengirl]

I just ordered the Enterolab test today. I am so hoping that I don't have the casein gene and that it's just lactose intolerance that will go away after I establish the gluten free diet. I'll let you know the results.