Laurelf

Hi,

I have had celiac for a few years. Lately, I have been cheating and eating gluten-free stuff - we were on vacation and I splurged mostly because getting gluten-free stuff on the run is hard. Anyway, I seem to be developing lactose intolerance - I get really bad abdominal pains about 1 hour after eating dairy. However, the cheating was over a week ago. Has anyone else re-developed lactose intolerance after having gluten again? My dh is still acting up, but I know that can last a long time after re-glutenizing. I should have learned my lesson by now...

Thanks,

Laurel

I just heard from my allergist and he thinks he is cross-reacting to grass pollen with a positive wheat and to ignore the result. I guess I have to understand cross-reactions better because to me, it means that if the grass pollen is out, he will not be able to tolerate wheat too?

My son, who has multiple food allergies, just got a positive IgE result to wheat, even though he eats wheat all the time with apparently no problem. I would think that it is a false positive except that he tested positive once in a skin test years ago and I have celiac. I know they are two different illnesses, but has anyone found a correlation between IgE allergies and IgA intolerance?

Thanks,

Laurel

I have been gluten-free for about 5 months. I did have a test done at enterolabs which showed a slight casein intolerance but I figured since it never bothered me before that I was ok. Maybe I didn't notice the problem with the milk because I was already damaged from the gluten and now that the gluten is gone, I am able to notice the dairy.

I have been doing well gluten free for awhile with an occasional hiccup here and there. I am now developing the same bad pains and bloating without gluten in my diet. However, I have kept milk in my diet as I used to tolerate it well. Could I be developing lactose intolerance now or should I search for trace amounts of gluten? When you are gluten free, are you more reactive to trace amounts? I wonder if maybe when I had full blown inflammation, my body didn't bother with trace amounts but now that my system is "clean" maybe trace amounts are starting to bother me?

BTW, I never went back to the dr who wanted me to go back on gluten for a month so he could re-do a negative blood test (despite the fact that I have a celiac gene, fat in my stool, an endoscopy/biopsy that showed flattened folds and possibly the early stage of celiac plus good response to a gluten-free diet and obvious problems after ingesting gluten)

Thanks,

Laurel

So, I have been pretty much diagnosed with celiac although the biopsy said "could be early sprue" and the blood came back negative but I have all the symptoms, DH, positive gene test, fecal fat, etc. I had not seen the "official" celiac dr though until yesterday as he cancelled a couple of appointments. So he says to me, "You could have early stage celiac, or a gluten intolerance, or just an inflamed gut - the only way to know is to go back on gluten for ONE MONTH and re-do the blood, and oh yeah, 5 % of celiacs will have a negative blood test anyway. When I went through all my symptoms, he kept saying it could be celiac but might not be. As for my DH, all that's left are scars. He suggested that if it flares during the month of re-glutenizing, to get it biopsied right away before I scratch it (yeah, like I can get an appointment with a dermatologist right away).

So, since I've been dying for Chinese food, I had my husband bring in the food last night. Well, during the night, my behind itched real bad and now today I have really bad gas, bloating and pains. I don't think I can take a month of gluten. Off gluten, I'd been feeling so good - my skin looks wonderful for the first time, no problems with digestion except for occasional cross-contamination problems. The dr said he won't put the "celac diagnosis" on my record until it's "official" because of the health insurance implications ??!!

I asked if my son should be tested and he said if it's "just a gluten intolerance" than no but if it's celiac, then yes.

How important is the official diagnosis? Is it worth a month of pain?

Thanks,

Laurel

I just got my complete medical records from my doctor as I am changing primary care drs. In looking through the various labs done throughout the years, several times I had low SGOT (AST) results. Doing a quick google search said it could be from vitamin B deficiency. Also, a year ago, my blood showed a vitamin D deficiency. Could these have been early signs of celiac that went unnoticed?

Thanks,

Laurel

I just ate at Uno's Chicago Bar and Grill. I asked for the gluten-free menu. I ordered diet pepsi, ceasar salad, hamburger with no bun and the mashed potatoes - all were on the gluten-free menu. I have no idea what is causing it. The potatoes had cheese and sour cream mixed in, but I have been having milk products all week without a problem, unless there is hidden gluten in the sour cream? I was thinking maybe there was cross contamination with the salad (maybe they just pulled off the croutons instead of making it fresh) but would cross-contamination alone cause a bad reaction (bad pains, bad diarhea)? What makes it difficult is that I don't always have the same type of reaction when I have gluten - sometimes I get diarrhea, sometimes just the pain, sometimes just DH.

Any help would be greatly appreciated.

Thanks,

Laurel

It is possible to have negative blood work and really be very sick not just in the early stages. Some of us just don't show up positive on blood work and those of us who don't can suffer for years if doctors rely only on them, like mine did.

This is one of the reasons why I'm finding a new primary care. My first one ordered the blood test and said that because it was negative that I was "crazy" for suspecting celiac. Luckily, my gi dr was at another facility and followed through with the endoscopy. I'm so sorry that you spent years suffering. It stinks that we have to be our own doctors.

Thanks for the pizza tip - I'll have to try it.

Laurel

My TTGA blood test was negative, but I've read that people with early stages of celiac can have negative blood tests.

As the night has progressed, my pain has gotten worse, so I definitely know that eating the pizza was the wrong thing to do.

Thanks everyone for your support! It's nice to be able to talk to people who "get it."

BTW, Mysuicidalturtle - I love your moniker! I have a sulcata tortoise and we had box turtles, so I'm a big fan of torts.

Laurel

I haven't had a pizza in over 2 months. We had some friends over decorating our tree and we decided to just order pizza instead of cooking a meal. I wasn't going to have it, but once I smelled it, I couldn't resist and had two pieces! About an hour later, I got some gas pains and heartburn (bearable) and my stomach got bloated. Well, my friend and my husband are saying, "wow - you can cheat. It's not that bad." I haven't had my whole litany of reactions - no DH yet although my stomach is itchy - no diarrhea. It's only been about 4 hours so maybe I will get other problems as the time goes on. Maybe it will take longer for me to react because I've been gluten-free for so long?

So not only do I feel guilty but I feel like I've lost all my credibility with going gluten free since this "test" wasn't bad. Here is another time when I wish I had an "official" diagnosis so I can tell my hubby that I do in fact have a problem. What's still so confusing is that the biopsy gave us "wiggle room" by saying either celiac or duodenitis, so my husband clings to the possiblity that I just had a bad infection before that is now healing and I should therefore not have to be gluten-free all my life (despite other evidence like the celiac gene, flattened folds from my endoscopy, elevated lymphocytes, igA in my stool and improvement going gluten-free).

I do have an appointment with a celiac specialist in December. But I'm finding it so hard to convince everyone that this is real. Of course, it doesn't help when I sabotage myself! Was is this so hard? With my son, he has a clear diagnosis of food allergy and we don't question whether eating the food will make him sick or whether it's ok to cheat. With him, it's strict avoidance and everyone's on board.

And I've been so good, too. We went out to dinner for Thanksgiving (I didn't want to) and I grilled the chef about the food, etc. I ordered turkey without stuffing and as I got half-way through eating, there was stuffing under the turkey - they just tried to scoop it off instead of making a fresh plate! i stopped eating and gave the rest of my plate to my hubby. I wanted to complain, but I didn't want to ruin everyone else's holiday so I went hungry. And then I blow it with pizza today! Happy Holidays, sigh....

Laurel

I've been using Bare Minerals make-up from Sephora which I was told is g.f but made in a facility. I have DH and I think the make-up is bothering my face. Anyone else tried this make-up and had problems? There also could be something else in it that I'm sensitive to and don't know it.

Thanks,

Laurel

Mysa,

I started getting really bad pain under my right breast last night and it hasn't gone away. I too am wondering if this is related to celiac.

I have been gluten free for a couple of months now but I still get DH flairs and occasional diahhrea. I haven't eliminated milk completely though, even though Enterolab found I have IgA levels to casein. I thought I could get away with taking Lactaid, but I think my milk intolerance goes deeper than lactose intolerance.

I am curious if anyone has an answer to the breast pain issue?

Hang in there - if I find out any more about the pain, I'll repost but I'd love to hear if anyone else has had this.

Laurel

I'll take a stamp, too! Why is it so hard for people with celiac to be treated fairly? It sounds like a lot of people here have experienced problems with people believing you or taking you seriously. What is it about celiac that makes people react that way?

Thanks for the motivation Ahorsesoul and cat3883. It's easier to stand up for my son than it is for me sometimes.

As for over the top Roda, people have been thinking for years that I've been over the top with my son as I get nervous at playgrounds, birthday parties, etc and have made decisions to keep him away from certain things (like baseball games with peanuts everywhere). With him, I can stand up and say I'm his mom - I know what's best for him because I've seen the results of a reaction and I don't care what people think - I look at it as saving his life. With me, I haven't yet developed that attitude maybe because it's harder to justify being over the top when people don't understand celiac. Am I making sense?

Also, does anyone have a medic alert bracelet for celiac? I have one because of my allergies but I wonder if I should add celiac to the bracelet.

Thanks everyone! What a great group of understanding people,

Laurel

I went to a breakfast restaurant yesterday and asked for only eggs, bacon and home fries. The waitress assured me there was no flour in the fries. Less than an hour later, I was running to the bathroom with bad cramps and got the usual yellow diarrhea and the DH that had been on my stomach got really itchy. I didn't realize how sensitive I have to be to cross contamination now. My son has food allergies and I am very careful about cross contam with him but I thought maybe I could be more relaxed about gluten.

To make matters worse, some of my family and friends have said that since I haven't been officially labelled celiac yet despite the mountain of evidence (the DQ8 gene, DH, flattened folds seen on the scope, high lymphocytes and "no significant villous atrophy" in the biopsy, IgA and fecal fat in stool) and since my primary care's nurse refuses to call me celiac because my blood is negative, that I am crazy for going gluten free. My primary care nurse actually told me I should see a therapist for insisting I have it and my friend who is a nurse said I don't have it because the atrophy was not significant!

I just want a clear diagnosis and a clear plan so I can feel better and have my family and friends understand. For example, my in-laws are insisting we go out to eat for Thanksgiving even though I won't be able to eat the gravy or the stuffing and who knows what else. Because i can't say "Look here it says celiac in my record" I feel that I have no leg to stand on.

Sorry, but it was almost easier dealing with my son's food allergies because he had clear immediate reactions and a clear diagnosis and lots of sympathy. I have been so sick for so long that I think people think "there she goes grasping at straws again".

Sorry but I had to vent. Thanks for listening.

Laurel

John - maybe you and/or someone else could answer this. On my biopsy report, the dr. wrote "increased intraepithelial lymphocytes and prominent brunner's glands. No significant atrophy. could be chronic duodenitis or early sprue."

Is duodenitis separate from celiac or related to celiac? and does the use of the word "significant" mean there was some atrophy?

Thanks,

Laurel

I've been gluten free and trying to be lactose-free but every time I have something with milk, my face breaks out and the DH rash comes back on my tummy. Can milk cause DH symptoms?

Thanks.

Laurel

Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?

Laurel

I'm still tryhing to figure this all out myself, but you can have gluten sensitivity without having celiac. There is a lab called enterolab in Texas where they can test for gluten sensitivity and also to see if you are carrying one of the celiac genes. My understading is that you can't have celiac without a gene but you can still have a gluten intolerance that might not affect your intestines as severely as celiac and thus give you a negative biopsy.

Also, a true gluten allergy is different from celiac and intolerance since with celiac they measure IgA antibodies and for food allergy, they measure IgE antibodies. The test for food allergies is called a RAST bloodtest, but my understanding is the symptoms of allergy are different from celiac -hives, etc, although allergies can give you digestive symptoms.

Good luck.

Laurel

It could be nickel allergy. I developed that out of the blue a couple of years ago. My wedding band which had been fine for 10 years suddenly caused my finger to swell and turn red and itch and I had to have the band cut off. Even though it was supposed to be gold, it had white gold mixed in which often contains nickel. You have to really make sure that gold is 100% pure as they often stick nickel in without telling you. I switched to stanless steel watch as my wrist had a problem with the gold watch.

Good luck

Yes, a fresh crop will occur for me if I ingest gluten. But also, I have had minor outbreaks when I have been reallly careful. These have tended to be much less severe, quicker to heal, and much less frequent the longer I stay gluten free.

So I did blood tests which were negative to gliadin IgA and tisse transglutaminase. I did entrolab stool test which showed slightly high IgA for gliadin but negative for transglut. I also am carrying one gene for celiac and one gene for gluten intolerance.

Had an endoscopy yesterday. I was told I had flattening of the folds of my duodenum which was "indicative of inflammation" and she did a biopsy for celiac (which I won't get for 2 weeks). She warned that the biopsy could be falsely negative because I had been off gluten for awhile (although I tried to eat gluten the day before the test).

So am I or aren't I? Can you have celiac without the tranglut being high? Can an intolerance that doesn't rise to the level of celiac cause fold flattening?

My head is spinning!

Laurel

I had my endoscopy today. It wasn't bad - I don't remember much. The dr. did say I have flattening of the folds in my small intestine which she said is indicative of inflammation. She did biopsies for celiac.

Any one else have flattening of the folds of their intestine?

Thanks,

Laurel

[i've been gluten-free for about 2 weeks. I hope that doesn't mean the test for celiac will be falsely negative. Maybe I should have some gluten tonight before the test?

I'm nervous about my endoscopy tomorrow. I know I'll be sedated but the thought of something down my throat freaks me out!

I have been gluten free for about 2 weeks now (although I accidentally ate croutons in a salad last night!) and am pretty much milk free, altough it's hard. Symptoms are calming down a bit - rash on face and legs is going away - I lost 10 lbs! I'm finding that I'm hungry all the time, and when I see a commercial for pizza or hamburger, I go crazy with cravings!

They are doing the endoscopy because of GERD, but I'm going to ask them to take biopsies for celiac too. How soon do they give you the results?

Thanks,

Laurel