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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Waiting On A Dx
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12 posts in this topic

Hey all. This is my first post on the boards. My story is a long one, and the only reason I'm here is because it's one of the last 'possibilities' on a very long list.

 

Sorry for the long post. I just figure the more info I share, the better.

 

Back in May of this year, I had things going on in my life that made me feel very stressed and caused large amounts of anxiety. Shortly after this, I removed myself from my stressors, but the feeling of anxiety remained. Symptoms such as gnawing and burning pains in my stomach coupled with nausea (especially at night when I would lay in bed), no appetite and burping almost constantly made me think I had a stomach ulcer. I also lost ten pounds. I went to my primary, who agreed, and said I should have an endoscopy done.

 

Now, I don't have insurance. I've tried, but because I'm sick, no one will support me (yet).

 

I was told to take prilosec and to avoid spicy and fatty foods. I did as I was told for two weeks. Once I ran out of prilosec, I went on Omeprazole to save money. When I was off prilosec, I felt very, very ill. I had stabbing pains in my abdomen and couldn't eat. Sadly, omeprazole made me ill as well (big D) so I went off it.

 

By this time, it was a month or two later, and I wasn't feeling any better. I was barely eating, and had close to no sleep. I slept during the day and suffered major bouts of depression and anxiety. One thing I did realize was that, whenever I felt nausea or had the gnawing pains in my stomach, eating something usually made the symptoms go away. This only lasted two hours at most, then I'd have to eat again.

 

Hubs and I changed my meal routine so I was eating multiple small meals throughout the day. But I was still suffering from the stabbing pains in my abdomen, nausea at night as well as C and D every two to three days (one and then the other).

 

In September, I decided to stop with the dairy, caffeine as well as most sodas (aside from Sprite). I also went to a local urgent care because I couldn't stand waiting for health insurance anymore. The woman I saw checked me out, prodded my abdomen and told me I had Gastritis. I was given a med for my nausea and was told it should help most of my symptoms.

 

I waited a few days, but the meds only helped for three days before my health went downward again. The stabbing pains were worse, my mind was foggy, my hands shook, and I can barely concentrate on the smallest things. So, I went back to see her, and she still insisted it was gastritis. Bloodwork was taken for liver, kidney as well as H. Palori. All tests came back negative.

 

I didn't go back for a week or so. We decided to remove wheat and most other gluten as a possibility. I was starting to have very pale stools. This was a concern, even though the bloodwork for my liver was fine. We went back to urgent care, saw a new doctor, and he assured me it was probably because of my diet change. I had to eat more protein. So I did, and the pale stools slowly went away.

 

The only thing that was left to check on a possible diagnosis was a stool culture, which the woman at Urgent Care told me during our first visit as a possibility. Fast forward a few days to get the culture, followed by going to UC (again) to have it tested. They did a hemocult, which was negative. The doctor on call saw me, but didn't listen to what I had to say. He asked questions, then kind of assumed my answers. He said I had IBS as well as Colitis, wrote up three scripts and sent us out the door (not a good experience).

 

Hubs and I read up on colitis before filling the scripts. We didn't agree with the diagnosis. This was in the middle of the week. By this point, I was still off dairy, caffeine and gluten.

 

On the weekend, we went to the new Urgent Care closer to home, and what a difference! It was clean, organized, and the doctor sat with us for close to an hour, going over my history. Once we finished, he looked at us and said that I either had a gluten intolerance or something was wrong with my thyroid. He told me I had to go completely 100% gluten free to see if my symptoms cleared up. He asked me to do this for two weeks, with no cheating. I hadn't cheated before, but he said sometimes even rice (which I was eating) can be contaminated.

 

It will be two weeks this Saturday.

 

Last week, I went to see a holistic doctor. By now, I'm out of options. I still have the stabbing pains and slight nausea at least once a day. I went over my history with her as well as what I'm eating now. My staples currently are chicken, ground turkey in place of beef, gluten-free pastas with either rice flour or corn flour in them. She advised me that corn is harder to digest, as is quinoa. She also agreed it could be celiac, which I may find out tomorrow during my first full visit (the last one was a consult).

 

I've been keeping a food journal for almost two weeks now that includes food, reactions as well as bathroom visits. This past Friday, I made something with gluten-free pasta. I didn't look at the ingredients until I starts to feel sick and bloated. It had quinoa flour in it (never had quinoa before). By the evening, I had sharp stabbing pains, which got even worse come morning. I was constipated, and the pains kept moving from left to right, then left again.

 

Three days of pain and being curled up in the chair until it passed. Early the next morning, I had severe diarrhea. So, I now know quinoa is a big no-no for me.

 

As for why I'm here now, even though I still have the feeling of being unwell, I have seen improvements since I went gluten-free. I have suffered mood swings, loneliness and depression especially. I'm also tried, restless and have muscle fatigue.

 

I'm hoping to get closer to a definite answer tomorrow, but I'm also scared. I've been frustrated since most restaurants around us don't offer gluten-free, and if they do, it's only one item on the menu. I realize eating out is a thing of the past, and that it will take time to get used to it.

 

With everything I've said though, is it similar to what others have experienced?

 

I've had stomach issues for as long as I can remember. Not to the point of being homebound (until this past year) but going two or three days without a bathroom visit has been my 'normal' since I was a teen.

 

Any bit of advice or encouragement is appreciated. I'm trying to stay calm, but inside, I'm pulling my hair out and looking for a way to escape.

 

Edit to add: Oh, not sure if it matters or not, but I was also tested for anemia. Which like all my other tests came back negative.

Edited by Nicole Thomas
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I'm thinking that it may be more of a cross contamination issue than the quinoa, especially if you are still having issues.

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Hubs has gone gluten-free with me. However, I haven't changed our cookware as it never occured to me. So I suppose that could be the reason then?

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You only need to change things that can't be scrubbed clean.  Something with lots of scratches or cracks might be hard to get clean.  A colander used for gluten pasta is next to impossible to clean out each little hole.  Toasters are full of gluten crumbs.  A PB jar might have bread crumbs in it.  That sort of thing.

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Hubs has gone gluten-free with me. However, I haven't changed our cookware as it never occured to me. So I suppose that could be the reason then?

Yep, that would be an issue.

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You should read the newbie thread and check out about.com for directions for making your kitchen gluten free.   I've been gluten-free since March, but wasn't able to eat quinoa either.  I"m hoping that I'll be able to do so, in a few more months once I've healed a bit more.  You could also have a corn intolerance too.  I'm suggested that you just stick to whole foods (rice, potatoes, sweet potatoes, veggies, fruit and meat/fish (fresh only).  

 

But, you HAVE TO BE EATING GLUTEN IF YOU ARE TAKING A CELIAC TEST.  If you are playing for the test yourself, I'd wait several weeks (after consuming lots of gluten) before taking a celiac blood panel.

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Looks like I need to go out and buy a few things. I used my collander almost every night, which probably explains the slight nausea I feel sometimes after eating. Our cutting board is plastic, so I'll be replacing that as well.

 

What about the ceramic part to a crock pot? It seems fine to me, but it is old. Still safe to use?

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Looks like I need to go out and buy a few things. I used my collander almost every night, which probably explains the slight nausea I feel sometimes after eating. Our cutting board is plastic, so I'll be replacing that as well.

 

What about the ceramic part to a crock pot? It seems fine to me, but it is old. Still safe to use?

 

 

I just scrubbed my crock pot and then it died and I had to get a nicer looking one.  Maybe you will get lucky, too.  :D

 

If you want to be tested for Celiac, you need to be eating gluten.  also, you have spent so much money on the urgent care and now a holistic "doctor", why not just go to  a regular MD and pay for it?  Some doctors will give you a better price if you pay at the time of the visit.

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I've had bad experiences with the doctors here. The urgent care are actually the same price, so it isn't too bad. The holistic will be a little more, but I prefer natural vs. getting more perscriptions. I want off the Prilosec (among others) and so far, most docs want me to take something else.

 

I'm actually not planning on getting it tested at this time. I've been so sick the last 6 months, I honestly don't want to go bad. What gets me is why the doc would tell me to go gluten free, then say if symptoms go away, gluten was it. He said there was no way to test for it.

 

I'm planning to do more brown rice as it does seem easier on my stomach.

 

I do have a somewhat random question. I got some of Van's gluten-free waffles the other day. I had them yesterday for lunch, and felt sick soon after. I wasn't sure if that was the cause, so I did it again today to make sure. I feel sick again. I also noticed no matter how long I cook them for, the center is still...gummy? Not sure how to describe it. They have soy flour in them, but I never had an issue with soy before.

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I've had bad experiences with the doctors here. The urgent care are actually the same price, so it isn't too bad. The holistic will be a little more, but I prefer natural vs. getting more perscriptions. I want off the Prilosec (among others) and so far, most docs want me to take something else.

 

I'm actually not planning on getting it tested at this time. I've been so sick the last 6 months, I honestly don't want to go bad. What gets me is why the doc would tell me to go gluten free, then say if symptoms go away, gluten was it. He said there was no way to test for it.

 

I'm planning to do more brown rice as it does seem easier on my stomach.

 

I do have a somewhat random question. I got some of Van's gluten-free waffles the other day. I had them yesterday for lunch, and felt sick soon after. I wasn't sure if that was the cause, so I did it again today to make sure. I feel sick again. I also noticed no matter how long I cook them for, the center is still...gummy? Not sure how to describe it. They have soy flour in them, but I never had an issue with soy before.

 

 

Are you using the same toaster from before?

 

There are a lot of ingredients in those, it might be hard to tell if one of them is bothering you.  Maybe put them away and try them again in a couple of months?

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I am using the same toaster. I'll stop for now until I get a new one. I did have a different brand of gluten-free waffles a week or so ago, and din't have this issue, so I wasn't sure.

 

I feel like maybe I should've waited a while before I made my first post here. Feeling a tad overwhelmed. I did read the newbie thread and have a lot bookmarked between this site and others. I guess the point of my original post was to ask if it sounded like I was on the right track or not.

 

Since I've been gluten-free for a month now, I'd have to go on gluten for 2 months to get tested, right? I think it was 2 months.

 

If so, how do you function while eating gluten? I'm out of work, and couldn't work at all until this is cleared up. I'd like to get back to working at least part-time, but going back on gluten would mean staying out of work even more.

 

Sorry. I'm flustered, and in pain. I don't mean to rant or complain. I'm just looking for answers that I may or may not get from a healthcare professional. Most of the PCPs around me are clueless. Not quite sure who to go to next.

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If going gluten free makes you feel better, and a diagnosis isn't important, go for it.  Give it a good try and see if it helps.

 

Maybe in a few years, they will have perfected one of the tests that don't require eating gluten.  Just don't get talked into paying for any tests that aren't medically proven like "Non Celiac gluten sensitivity" tests or stool tests.

 

http://www.cureceliacdisease.org/archives/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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