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Vomiting, Unable To Process Foods


loca

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loca Newbie

Hello :) I've been sick since November 2002. Up to that point, I was a somewhat healthy 18 year old girl, active in school and work and whatnot. Anyway, I have always had an intolerance to wheat gluten, and was ok avoiding it until then. In November 2002, however, one of my younger brothers died and since that day, nothing has been staying in me, really. It started out with cereal and milk. I would end up throwing them up. After that, it was basically everything else, but especially processed foods, sugars (except for honey & pure maple syrup) and anything with animal fats in them. I have been to many doctors hundreds of times in the past year plus, with no help. I lost about 20 lbs. in the two weeks following his death. Most doctors brushed it off as grief and told me to see a counselor. I do, and as much as my brother's death saddens me, I've moved on. I've lost a sister, many friends and I've gotten used to death. Other doctors checked for so many other things: lupus (which was the diagnosis based on the ANA levels and some symptoms for quite a while, until my ANA levels were normal again), pancreatitis, gosh I don't even remember most of it!!!

Anyway, my doctor called me a couple days ago after she read an article in some magazine about Celiac and she wanted me to come in to test me again. I really am sick of the tests and my arm looks like a junkie's arm from so many needle pokes. Before I waste the time (and money!!) to go in and be tested, I wanted to come here and see if my symptoms were like anyone else's or if this is just another hope-its-finally-a-diagnosis.

My main symptoms are:

- Vomiting and diarrhea after eating almost anything but fruits, vegetables and unprocessed foods

- Extreme bloating

- My belly looks fat after I eat some things... I go from a size 3 to a size 10 in a matter of minutes, just with my belly, nothing else.

- I don't gain weight no matter what I do

- I'm always tired, to the point where I sleep 12-18 hours a day (and still sleepy after that!)

- Headaches and trouble concentrating

- Feeling stupid because I can never think straight (and I used to be a straight A+ college student). I feel as if I'm in a different world sometimes.

- Trouble driving because I can't always focus correctly

And during the past year, my blood tests have shown (mostly at different times; I've not had a blood test show the same results twice this whole time):

- Extremely low levels of white cells

- Low hemacrit

- Low red cells

- High RDW (whatever that is)

- Low platelet count

- Extremely low Neutrophils and Lymphocytes (whatever they are too)

- High & low ANA levels

- Anemia

Sorry for the long post, but if any of you have the same symptoms or know that these are symptoms for Celiac, please let me know. I don't want more tests, but I don't want to be sick anymore either!

- Bella. :wub:

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Guest aramgard

Bella, Are you eating any foods with gluten in them? If so, your symptoms do sound like Celiac. The blood tests are not difficult so, if there is a possibility of your getting better why not try the blood tests. You also may have developed a problem with dairy products, because of damage to your intestine. So if you test positive for Celiac, you should also eliminate dairy from your diet for at least a couple of months. Your symptoms sound a lot like many of us Celiac's, but don't despair. We all get used to the diet and compensate with other foods that we can eat, which are much healthier anyway.

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gf4life Enthusiast

Bella, You said you have always had an intolerance to wheat gluten. Were you diagnosed with Celiac before? And have you also been avoiding rye and barley glutens? There are many forms of hidden gluten out there, so maybe you have been having gluten all along and did not know it. The stress of losing your brother could have triggered the disease to go into a more active form. It often take a very stressful event to trigger the disease and from that point on the symptoms are much worse until you can get 100% gluten free. I would highly recommend that you get the blood tests done. Your symptoms are consistent with Celiac Disease.

God bless.

Mariann

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loca Newbie

I don't know all what foods have gluten in them... I eat mostly a vegan diet now because I can't have animal products but I was never diagnosed when I was little with Celiac. My mom just noticed that whenever she fed me bread or cereal with wheat gluten in it, I would cry and not be able to digest it right, sometimes it would come back up, sometimes it would hurt my stomach. She figured it was that because my nanny had the same problem with one of her kids. So I haven't been eating wheat gluten, but I wasn't even aware that there was other types of gluten! And does everything that has gluten in it have to be mentioned on the label? Because I have problems with other foods that don't say anything about gluten on the label. :\

Can it be diagnosed with just a blood test? My doctor said she wanted to do some test on my intestine as well as the blood work. If it's just blood work though I guess it's not that bad. :)

Thanks a lot and God Bless :)

- Bella :wub:

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Aimee Newbie

Mine was diagnosed by a blood test, and then the doctor said that they wanted to biopsy my small intestine to absolutely confirm things and assess the damage done.

It sounds like it quite possibly could be Celiac from what you've described. I also read somewhere that a traumatic emotional experience could spark it as well, which could explain why it showed up immediately following your brothers death. Mine showed up immediately after a surgery, to the day almost.

I'd let the doc run the tests, esp since you've been so sick and miserable for so long. If they come back positive, I'd also opt for a biopsy to see whats going on and confirm things.

I hope you find some answers soon, it sounds like its difficult to function and you shouldn't have to live your life like that.

=)

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gf4life Enthusiast

Bella,

They start with the blood test, and then do a small intestinal biopsy. It is not as bad as it sounds. You are asleep for it, and they put a small tube down your throat, into your stomach and look at the upper part of your small intestine. They take a few small tissue samples. It usually doesn't hurt at all, some people have a little bit of a sore throat afterwards. I've had this done twice, and not had any problems with it. the hardest part for me is not being able to eat or drink for the morning of the test. I always end up with a headache.

As for the foods that do contain gluten, no most do not say gluten on the labels. You have to learn what to avoid. There are some nice lists of what to avoid and what is safe, but if you are not completely off gluten right now, then please do not start yet. You need to be on gluten for the testing. Get your doctor to schedule the testing as soon as possible and get it done. Then you can go completely gluten free.

God bless,

Mariann

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      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
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    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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