Discussions related to testing for celiac disease. http://www.celiac.com/gluten-free/index.php Thu, 09 Feb 2012 18:45:44 +0000 60 http://www.celiac.com/gluten-free/topic/89788-falling-apart/ I am new to this site. I found it while searching for info on whether or not to be tested for celiac. After years of agony I tried going gluten free. I figured it would at least do no harm. But I quickly discovered I was a different person without gluten. I felt great for the first time in many years. I was gluten free for two months, then decided to go ahead and be tested for celiac for my family. I have two children and my sisters and my mom seem to have some symptoms. So here I am, on day two of eating gluten again. I feel awful! I am supposed to be doing accounting homework but I cannot possibly comprehend the words for the fog. I'm in pain and stressed out. I didn't really have a question or anything helpful to add but thought it would be nice to know I'm not alone in this, that there are other people who are like me and survived having to eat the poison again...]]> Thu, 09 Feb 2012 18:45:44 +0000 http://www.celiac.com/gluten-free/topic/89788-falling-apart/ http://www.celiac.com/gluten-free/topic/89783-how-long-after-gluten-free-would-symptoms-ease-or-clear/ running to the nurses office. It was the bathroom it was almost certainly diarrhea, if it was cramps and gas, it was almost certainly a bout of constipation. I told my parents about it when I was a kid and it was shrugged off. Tried again as a 20-something (when I finally got insurance), and it was shrugged off as hormonal (was in the process of switching birth control). Now mid-30s I am sick of being sick all of the time. I don't remember WHAT it's like to have normal bathroom habits and no stomach pain or cramping. So I finally broke down and tried primary care Dr #3 - who sent me to a GI.

So far, blood work and stool study have all come back as normal (including the blood work to test for celiacs). I have no "allergy" that showed up on a blood test, except a minor reaction to cockroaches (really?). Saw my GI again yesterday and have an endoscopy and colonoscopy scheduled on the same day the first week of March. At this point, batting 1000, scoring 0 in trying to figure out what is causing my symptoms.

FIrst recommendation (for diet) was to remove lactose from my diet. So trying Lactaid for milk, no cheese, etc. to see if that works. This started yesterday.

But I am curious, how long does it take for symptoms to ease after starting to eat gluten free? This last go round started in late Nov and at this point I feel trapped in my house as I don't know if I eat I'll either keel over in pain from stomach cramps or have to run to the bathroom and setup shop. My reaction can happen anytime I eat, so the Dr is working on IBS assumption right now, but I'm at wits end.

Thanks in advance
-Donna]]> Thu, 09 Feb 2012 17:59:13 +0000 http://www.celiac.com/gluten-free/topic/89783-how-long-after-gluten-free-would-symptoms-ease-or-clear/ http://www.celiac.com/gluten-free/topic/89766-waiting-for-biopsy-results/
Ive been living with what my doctor has called IBS for about 5 years now, about 6 months ago he ran the blood tests and some came back positive.. not sure which ones but he refereed me to a specialist (GI) I think he thinks im just lactose intolerant but he suggested we do a biopsy to confirm or not the presence of celiac's, this is the question.. yesterday we did the biopsy, after the test he said everything looked OK but the biopsy results wont be in for a week or so, since it looks "OK" is that a good sign that it might not be Celiac's? should the doctor be able to see apparent damage with his scope? Just curious I hate waiting..]]> Thu, 09 Feb 2012 01:40:47 +0000 http://www.celiac.com/gluten-free/topic/89766-waiting-for-biopsy-results/ http://www.celiac.com/gluten-free/topic/89757-entero-lab-gene-test-positive/
I had gotten two Celiac blood tests done, ten years ago and just recently. Both were negative. However, my IgA was low, and Entero Lab explained to me that because of that, any IgA test will not be accurate. IgG and IgE would be more accurate, but those are more histamine reactions (as in "food allergy" instead of "food intolerance/sensitivity.")

So, hats off to Dr. Langer for telling me to avoid gluten because of my Hashi's, and hats off also to others who have gotten this information out there into the public eye and helped me become aware of this. Because the MD's are CLUELESS. FRICKING CLUELESS!!!!

As much as I hate this new reality of my life, I have adapted pretty well to a gluten-free diet. Eating out is really the only problem (in general). As a family, our lives were hard enough having two daughters who are allergic to peanuts, tree nuts, and legumes (such as peas and soy). Now we add this to the mix and we become "that allergy family" at a restaurant, LOL.

Fortunately, because of my daughters' allergies, I understand how to read labels and deal with food problems. I just never in a million years thought that I'd need to do it for myself. In fact, I always (ironically) thanked the lord that "at least we don't have the celiac thing."

My youngest daughter is having a very hard time right now with PCOS. I suspect thyriod problems. She has tested negative for both thyroid antibodies. But now I wonder about gluten. I am taking her to a licensed Naturopath tomorrow, and to a Reproductive Endo next week. I will ask them to run a full Celiac panel on her (whichever one does it...I don't care....it's through the same lab covered by my insurance). I know for a fact that she has at least one of those genetic markers and I think it's a good idea to find out whether gluten is playing a role in her new hormonal problems.

MY next challenge for myself is to determine whether I also have a problem with casein. I strongly suspect that I might. I know that many of you who have gone gluten free have also gone dairy free. I have been resisting that, but my body is still unhappy with SOMETHING and I have to figure out what it is. Many people in the thyroid community have gone Paleo (no grains at all...at least I think that's what Paleo is). I don't know if I'm reacting to other grains. I sure hope not. But I'll just roll with the punches. I am coming to terms with this and it's just easier to accept it than to fight it.]]> Wed, 08 Feb 2012 22:17:29 +0000 http://www.celiac.com/gluten-free/topic/89757-entero-lab-gene-test-positive/ http://www.celiac.com/gluten-free/topic/89756-endobiopsy-results-are-in/
Here is where I've been...(I am so sorry for the lengthy post, but I just want to make sure I'm including the important points.)

- had an appendicitis scare in late July but appendicitis was eventually ruled out, and i was put on a full liquid diet for 3 weeks; I got terrible guidance, so I was eating anything that I didn't have to chew, including hot oat bran cereal, which made me really bloated; I began keeping a food and lifestyle journal as I resumed my normal diet, and I pinpointed gluten as a possible culprit...by then it was early November.

- gluten light from around the beginning of November until I had my blood test the first week of January, so that was about two months off gluten except for incidental exposure and a few crackers here and there

- blood results were:
tTG Ab, IgA: 4.9
Gliadin Peptide Ab, IgG: 72.5
Gliadin Peptide Ab, IgA: 2.3

Note that they didn't test my total IgA, so I have no idea if I have a deficiency.

- stayed extremely gluten light until about a week before the biopsy.

- the week before the biopsy, reintroduced gluten during a moderate version of the gluten challenge; basically, I ate equivalent of a piece of bread each day, a little more in the days just preceding the biopsy. by the time the biopsy arrived, my stomach was terribly bloated, I was having neurological symptoms and felt depressed and very fatigued.

- biopsy results indicate no parasites, no celiac sprue but DO indicate mild, patchy gastritis...they further tested for atrophy, metaplasia or dysplasia (all negative) and no Helicobacter were identified (which I take to mean I don't have H. Pylori?).

The results also state that they "the classic changes of untreated celiac sprue and the more recently described early or mild changes of untreated celiac sprue are not identified." Before the biopsy, I talked to my doctor about whether the gluten-light diet would undermine the results, but she said the lab could look for early signs of celiac...so I take this last note as a positive sign that they did in fact look for early signs.

Complicating things a bit is the fact that, since the biopsy, I'm unsure of how to interpret my "recovery". Over the course of the last week, I've been feeling very weird neurological symptoms that I have never experienced before. For example, I've had a slightly drunk feeling/feeling of taking OTC cold medicine at times, and also a random weakening of my grip in my left hand. Not at a particular time of day, not during a particular activity, just a sudden weakness accompanied by fatigue. I've also been incredibly anxious. I did experience quite a few mental/neurological symptoms when I previously ate gluten -- anxiety, depressed mood and really bad brain fog -- but I haven't had neurological symptoms that were also so physically manifested before...

I apologize for such an incredibly lengthy post, but does anyone have any general thoughts about the accuracy of my blood and biopsy results? Also, what do you make of my neurological symptoms? Do they seem like a result of my gluten challenge, or does it sound like something else (like carpal tunnel)? I saw my GP about the neuro symptoms last week, and she said I should see a neurologist after I got my results...Of course, my concern is that there is something else undiagnosed, and I know I can't rely solely on neurologists...so I really appreciate any thoughts you may have on my results or these latest symptoms.

Alyssa]]> Wed, 08 Feb 2012 22:08:28 +0000 http://www.celiac.com/gluten-free/topic/89756-endobiopsy-results-are-in/ http://www.celiac.com/gluten-free/topic/89754-neg-blood-symptoms-15-yrs-what-should-i-do/
I'm new to the site and to the world of food issues, but I've had horrible stomach/intestine burning pain after eating on and off for about 15 years. At times, it has made me vomit (rarely - I have a strong stomach for nausea), and once there was blood (scared me to death!). Usually, though, an attack will simply leave me in searing pain for 8-16 hours at a time. It began to happen when I was about 10 years old, and happened every month or two since then. My parents and pediatrician said it was just "stress" or "hormones" and that I would "grow out of it". They were wrong. Symptoms continued to worsen throughout high school and college, and after finishing grad school I was unable to eat anything at all. I lived on Dark Chocolate Ensure (fun to go to Rite Aid and buy cases of that as a 23-yr old), and generally had diarrhea within about 15 minutes of drinking it. I was unemployed and without my own insurance at the time, but I lost almost 30 lbs (much of it bloating, I think - I looked swollen all over) in about 3 months, and my parents finally took me to a Gastroenterologist.

I went through several fasting lipid panels which determined that I had slightly higher cholesterol but nothing else, and I don't remember anyone saying anything about allergies or celiac at the time. I had an endoscopy that surveryed my esophagus, stomach, duodenum, and the top of my small intestine, and found that all were raw, red, and very inflamed. I had a biopsy, but only for H.Pylori, which came back negative. I was told that I had GERD (despite the fact that the burning was mostly beneath my belly button, and not under my chest), and maybe IBS too. I was handled a prescription for 4 months of 40mg Omeprazole, told to eat more grains and less meat, and left to deal with it.

I went home and ate some whole wheat toast, but that immediately hurt, so I decided not to eat bread for a while and grew tired of feeling ill after Ensure, so I ate a lot of yogurt, froyo, fresh fruits, and rice. I ate maybe two small meals per day, and gradually felt better. I gained some weight back, and then I came down with mono (good luck, right?) and didn't eat much besides beef broth, organic ice cream (just sugar, egg, milk, cream, raspberry/coffee), and occasional pieces of very soft white baguette. Cream of wheat violently disagreed with me. I was still eating wheat obviously, but less than I used to, and when I finally got better, I had a blood test to see if I was back to normal. This time, I was checked for iron deficiency anemia, and I had it. I was already on birth control for years, and I still had (and have) periods of 5+ days, with 3-4 heavy days. I was told to get a bottle of Feosol and report back in a year. I was also told I have Reynaud's syndrome, since my nails turn blue and my feet/hands get really cold and turn white for no reason that I can see.

At my first job, I tended to eat all manner of starchy crap because I wasn't making so much, and it was commonly left out. For the next two years, I was gassy, bloated, constipated, always feeling full, still anemic, and very, very tired all the time.

I still didn't really think anything of food allergies until I stumbled onto the Paleo diet, tried it, and felt really good, digestively speaking. Then I started to notice that when I ate breads, oatmeal, beer, etc, I got that signature burn at a low level in my gut. If I kept eating it, the burn would get stronger. So, I did what anyone would probably do if they didn't know about testing for Celiac - I quit eating gluten most days, and most other grain products too. Now and then I'd have some, and once I did a little "test" to see what would happen if I ate a lot. I swelled up, looked pregnant, started passing undigested food, and had constant nausea and discomfort. I also became increasingly depressed, with wild mood swings and anxiety that resolved upon eating meat and vegetables with no grain.

After about a year of this on/off gluten-free diet, fast-forward to today. I finally did some research on intolerance, Celiac, and allergies. Even though I am between jobs and don't have great insurance, I decided to test for food allergies. This was right after my dentist told me I had bone loss and minor gum disease, even though I barely eat sugar and I consume lots of calcium - oh, and I'm 25 years old. About 2 weeks prior to testing, I tried to eat more wheat products - a slice of toast here, a cup of tortellini there, and since my stomach was uncomfortable, I figured this would be good enough.

I got positive on soy and corn allergies via the skin prick test, but negative on wheat allergy. I immediately dropped the soy and corn (which explains the immediate reactions to Ensure several years ago, I guess!) from my diet, and requested the Celiac blood panel. They said I had eaten enough wheat to get a meaningful result. I was called a few days ago with a negative result, and told "everything is normal." I asked for a paper copy of the test, but so far have not received one. They told me "if you don't feel good when you eat wheat, just don't eat it." I'm not eager to do a gluten challenge and re-test (plus biopsies are pricey!!!). But given the downsides of having undiagnosed Celiac and continuing to eat gluten occasionally or accidentally, I'm a little afraid to just leave it at that.

The strange part of the whole thing is that I got definite hits on two substances I sort of thought I might be sensitive to, but nothing at all for the one substance associated with all my worst bouts with gastritis - in fact, I once had a bout of nausea and severe burning that kept me in bed for almost 2 days straight in college, after eating only a dish of whole wheat pasta and a light shaving of Parmesan cheese (which I've eaten by itself before and had no issues with) due to an empty fridge situation. I just find it really confusing that the thing that obviously (to me) is a big contributor to my 15 years of debilitating stomach episodes apparently hasn't left a trace - and I'm worried that it's my fault for going very gluten-lite before getting tested.

So what would you do? Genetic testing to see if it's a problem and go from there? I don't feel taken seriously by the medical establishment, or by anyone else. Even my boyfriend asked if I wanted it to be Celiac. Of course I don't! I just want to feel confident that I don't have something serious so that I can eat what makes me feel good and get on with my life

Thank you in advance for your way-more-informed opinions!!!!!]]> Wed, 08 Feb 2012 21:17:42 +0000 http://www.celiac.com/gluten-free/topic/89754-neg-blood-symptoms-15-yrs-what-should-i-do/ http://www.celiac.com/gluten-free/topic/89747-thyroid-issues-and-celiac/
I've been having lots of problems with anxiety, heart palpitations and panic attacks. Feeling very tired all the time. The issue that's really bothered me recently has been painful swollen glands in my neck and under my right arm (my initial thought was breast cancer but they've done a batch of tests and that all seems to be fine, but that was how they diagnosed the thyroid nodules).

I nearly always have a phlegmy cough that won't go away - periodically get told it's asthma but it's not really a wheeze, it's just a constant annoying cough. I pass something nearly every time I go to the toilet - it can be 4-6 times a day or even more. Mostly it's solid and looks fairly normal but it nearly always floats. My stomach is often bloated and sometimes I can actually feel or see where the upper part of the bowel is blocked for a while. I've never really given the stomach issues too much thought as things always move on eventually, but thinking about it I can remember even as a child having quite painful stomach cramps and not knowing why - nothing was ever looked into or done about it.

Could this be celiac? My problem is I'm living in Kuwait and finding the medical system both expensive and not very intelligent - the doctor looked at my thyroid results, clapped his hands, said everything was within the normal range (just) and sent me home. So I feel totally disinclined to go back and hassle him for yet another test - he has already decided I'm a hyperchondriac. I could wait and get tested when we're back in the UK but if going gluten free would sort out some of these issues, particularly the gland issue, now, I'd much rather just get on with it. I have a good friend who's a nutritionist who says you can have a perfectly healthy and nutritious diet without any gluten. Is it okay to go ahead and try it for a few months, until we go home, without a diagnosis?]]> Wed, 08 Feb 2012 19:01:39 +0000 http://www.celiac.com/gluten-free/topic/89747-thyroid-issues-and-celiac/ http://www.celiac.com/gluten-free/topic/89743-newbie-with-questions/
I am new to this forum and am just trying to find relief and to feel like myself again. I’m a 40 year old mom who used to run marathons. Several surgeries and these tummy problems have thrown me back and I really want to be active again.

I’ve had “digestive issues” for several years now. I’ve have a colonoscopy and an upper done and both look fine. My uncle has Celiac and I was tested for it and it was negative. I’ve been given the blanket diagnosis of IBS. However, both my GI Dr and my OB Dr have suggested in the past that I may want to try the gluten free thing for a while to see if it helps.

My severe symptoms are intermittent, but when they are here, they are here for days. But on an everyday course, I am usually crampy, uncomfortable to a degree. I will get severe bloating/gas/sharp cramps in my stomach and they eventually “work themselves out” the lower they go. These can be VERY uncomfortable and sometime the gas pains extend up my sides and into my back before starting to travel down. I am either constipated (which causes more pain and gas) or have really soft stools (not quite diarrhea) . I’m never “normal” in my bowel habits.

In addition, I sometimes get what I call “sick headaches”, for lack of a better term. The headache itself is fairly mild, but I’m always nauseous. These can also last for days. It feels like a bad case of motion sickness.

Do my symptoms sound like it could be a Gluten sensitivity? I know I don’t have Celiac disease, but I wonder if I could be prone to having a sensitivity since my Uncle has Celiac Disease? I’ve been very intimidated about attempting to go gluten-free. I work full time, have a husband, 2 kids and 2 step children. I’m afraid I won’t have the time, funds or ability to maintain a gluten-free household. I am willing to give it a try though, if there is a chance of me feeling better.

Thanks for listening and I look forward to your responses!!!

Kelly]]> Wed, 08 Feb 2012 16:42:21 +0000 http://www.celiac.com/gluten-free/topic/89743-newbie-with-questions/ http://www.celiac.com/gluten-free/topic/89720-gone-gluten-free-but-have-questions/
My experience going gluten free has been positive. I've lost about 2 inches of stomach bloat (not fat because I haven't lost weight), and my stomach problems (alternating diarrhea constipation) have resolved. I feel I've made the right decision but wish I had a diagnosis to support my "alternate lifestyle." I am however reluctant to go back on gluten for testing. I have found that if I accidently ingest gluten, that a migraine sets in within 30 minutes and I have immediate tongue tingling and mouth sensitivity. Stomach problems usually follow. When the symptoms set in, I review what I've eaten and find that there was hidden gluten in the meal.

My question is, do I need a diagnosis? And are my reactions to gluten common after having given it up, especially the tingling tongue??? It seems extreme to think that I could go from eating a gluten-full diet one month and two months later be so sensitive to a little gluten. Thanks in advance for your thoughts. I'm going to see a new gastro doc in the next couple of months for a colonoscopy (both my father and grandmother had colon cancer) and I want to be able to ask about the testing and know my options. Again thank you!]]> Wed, 08 Feb 2012 00:38:13 +0000 http://www.celiac.com/gluten-free/topic/89720-gone-gluten-free-but-have-questions/ http://www.celiac.com/gluten-free/topic/89715-can-gluten-lite-slow-onset/ Her doctor performed an endoscopy, which was negative.
He said she could eat whatever she wanted, but confidently predicted that
in 6 months she would have full-blown celiac disease, and then would have to go totally
gluten free
My wife and I tried to go gluten-lite - no gluten at home, bu she can eat pizza, cake, etc
when offered it outside the home (which is distressingly frequent).
2 1/2 years on, her tTGA is about the same, and she has no symptoms.

Our thinking was that if gluten is making her react, the less she has, the longer till
celiac disease develops. Apparently there is no evidence that this works (or doesn't)
Has anybody else tried it?]]> Tue, 07 Feb 2012 22:01:23 +0000 http://www.celiac.com/gluten-free/topic/89715-can-gluten-lite-slow-onset/ http://www.celiac.com/gluten-free/topic/89714-endoscopy-tomorrow-what-to-expect/
Just nervous!

Thank you!]]> Tue, 07 Feb 2012 21:32:45 +0000 http://www.celiac.com/gluten-free/topic/89714-endoscopy-tomorrow-what-to-expect/ http://www.celiac.com/gluten-free/topic/89713-just-had-my-endoscopy/
Got a bit of a headache, nothing serious. I just took some tylenol. Also, I don't care what they say about having no nerve endings there, I can tell they were messing around in my upper GI, it's a little sore. Again, nothing serious, though.

Get this, the doctor took 20 biopsies! I asked him, just before they sedated me, "How many samples do you usually take? and he said "Six, although if things look weird I might take more." Apparently I had a pretty obvious "cobblestone" appearance in the duodenum that is consistent with celiac. The pics are weird looking.

Well, it will be interesting to see what the results are. Meanwhile, on to the gluten-free adventure!]]> Tue, 07 Feb 2012 21:27:18 +0000 http://www.celiac.com/gluten-free/topic/89713-just-had-my-endoscopy/ http://www.celiac.com/gluten-free/topic/89710-celiac-food-allergy-ibs/
I'm 22 years old and newly married. I started working at a yogurt shop about 8 months ago and it seemed that the problems started there. I am constantly bloated (I mean 24/7) and always have gas. Constipation and diarrhea are a normal occurrence and intense bloating where I cant stand. I also have noticed that I wake up needing to pee in the middle of the night constantly now and that never used to happen. And it's painful when I wake up, like my bladdar has been full for days! There has been an increased amount of mucus in my movements, seems to get worse and worse. I will have sudden jabs of stomach pain and diarrhea which is extremely inconvenient and embarrassing. My doctor was concerned it might be crohns or some inflammation of my intestines?

Naturally, I thought it was the yogurt. I went on a diet with my husband for about 3 weeks where we didn't eat any sugar, diary or gluten. All of my symptoms went away (minus constipation). When I got off the diet, I figured I'd start trying to figure out what it was that was giving me the symptoms before. I should've done it slowly but instead I added gluten, sugar,diary and yogurt all back into my diet at once and immediately all the symptoms came back. I cut out the yogurt and I'm still having the problems. So now I'm starting to think that it's more than just the yogurt. My dad and brother are both lactose intolerant, so I thought that may be the issue. But, I don't drink nearly as much milk as I used to and my symptoms seemed to have gotten worse.

I have a friend who just told me that she recently cut out gluten from her diet because she was diagnosed with celiac. I had never heard of it before this. All of her symptoms matched mine. Plus, my dad's doctor, just told my dad to start cutting out gluten for some of his symptoms (which are very close to mine). Ah! What to do? I love all things bread and wheat. Going gluten free would be extremely hard for me (as I'm sure it is for everyone else). I'm just not sure if my symptoms are relevant to celiac at all. Some symptoms match, some seem totally far off.

Am i overreacting thinking it's celiac? Am I more likely to just have an intolerance?]]> Tue, 07 Feb 2012 18:34:15 +0000 http://www.celiac.com/gluten-free/topic/89710-celiac-food-allergy-ibs/ http://www.celiac.com/gluten-free/topic/89696-self-diagnose/ 1. Bloating/upset stomach/gas
2. Constipation that has been going on for 7 years
3. Sleeplessness (wake up every hour)
4. Hip pain (not sure if this is from running or something else)
5. High bilirubin values

I went to a GI doctor about the constipation and had a colonoscopy. Two polyps were found; one pre-cancerous and one not. She told me to do things I am already doing; I eat very healthy, drink lots of water and exercise. She never once mentioned a gluten intolerance but the more I read about it the more I am becoming convinced that this is the core problem.

My questions are:
1. Do you think it sounds like I might have celiacs?
2. Would it be bad if I just go gluten-free without confirmation from my doctor?

Thank you!]]> Tue, 07 Feb 2012 14:58:46 +0000 http://www.celiac.com/gluten-free/topic/89696-self-diagnose/ http://www.celiac.com/gluten-free/topic/89689-gluten-free-or-not-before-endoscopy/ Many thanks in advance.
I am also completely Phobic about the Endoscopy, I understand that it is usually given under sedation but I do not want to know anything about it, I had sedation to have a tooth removed and could remember most of the procedure !]]> Tue, 07 Feb 2012 09:03:16 +0000 http://www.celiac.com/gluten-free/topic/89689-gluten-free-or-not-before-endoscopy/