Confused And Frustrated

[kaitlyn77]

I have been reading on this site for a while and everyone seems very helpful.

I am 19 years old and I have been having symptoms that sound like celiac to me.

About three years ago I started to notice certain foods gave me extremely bad stomach cramps and I would rush to the bathroom with diarrhea. One of these foods was Cheerios. About six months later I had my gallbladder removed because it was not functioning properly. They told me it was very rare for someone my age to have gallbladder issues and they never fully explained why mine stopped functioning. I thought this would cure all my symptoms but it did not. Shortly after the surgery I developed an eating disorder (anorexia). It only lasted about six months though and today I am completely recovered from it. During this time though, I was still having stomach issues. I had constipation and sometimes diarrhea. I also began to feel very sick after lunch every day and would end up in the bathroom at school with stomach cramps, diarrhea, and nausea. I took my lunch every day to school and usually it was a peanut butter and jelly sandwich. I stopped eating those for a while and felt some better. I still could not eat cheerios and every time I ate Japanese I would get the same symptoms also. These continued and last November, I got severe pain in my knee. It would swell and hurt if I tried to do any physical activity. I saw a physical therapist and could not determine what was actually wrong with it from the way I described the pain. I eventually decided to deal with the pain and it has gotten better but occasionally it will flare up and now sometimes I feel pain in the other knee. About three months ago, I was tired of the constipation with alternating diarrhea and fatigue. I saw a GI dr in April. I have become very frustrated with this. Around this time, my stomach began bloating after meals and I look like I am 5 or 6 months pregnant. I also began to get bad migranes. She decided to do a biopsy. I asked her to check for celiac. It came back negative for celiac and H pylori but she said my stomach looked very irritated and inflamed. She prescribed heartburn medication. It did not help. She then tried antibiotics which did not work. I had my second appt with her last week and she said it could be gastroparesis. However, I do not have these symptoms and do not get full early. She did some blood work and everything including celiac came back negative. After my appt I decided to try a gluten-free diet. My stomach has looked better than it has in months!! Three days after I started the new diet, I had to eat pasta at a friend's house and my stomach was huge again.

Does this sound like celiac?

I am very frustrated with the dr and she tells me she has done everything she can.

Sorry for the long post!!!

[kaitlyn77]

I also forgot to mention I have been taking medicine for an under active thyroid since I was 13.

[GlutenFreeManna]

Sounds like celiac or gluten intolerance to me. Of course I might be biased since I diagnosed myself. If I were you, first thing I would do is get a copy of the blood test results and find out which tests they did and exactly what the numbers were. You can post them here if you need help interpreting them. They have to give you your records by law, so just call and tell them you are coming in to get a copy (they may charge you a copy fee). The reason for getting your results is that few doctors know anything about celiac. They may have only run one test, instead of a full celiac panel or they may not know how to read the results properly. I have read on here stories of people that were told it's not celiac even though the test results indicated it WAS! The next thing you need to know is that false negatives are common. So even if you get the results and they do look negative they may be wrong. Some other tests you can push for if you need a diagnosis: endoscopy with biopsy, genetic testing, or stool testing through enterolab. You may have to search for a doctor that knows about celiac to do testing you need. Also if you want to get a positive test results you need to keep eating gluten until your testing is done.

[RoseTapper]

My son had almost identical symptoms to yours when he was a teenager, and I suffered with those symptoms and others for most of my life. My knees swelled up painfully during my teens and 20s, too. I just returned from a celiac conference where one expert stated that 7 celiacs out of 10 will test negative for celiac unless there has been total villous atrophy. In other words, until the lining of your small intestine is pretty much destroyed by celiac, your tests may continue to come back negative.

Since you've done so well on a gluten-free diet, you should be pleased to know what is causing your symptoms. In cases like yours, I don't think you need a doctor to agree with you--you know yourself best.

[kaitlyn77]

Thanks so much for the help!! I have another question, they told me from my lab results I was a little dehydrated. However, all I ever drink is water. Has any one else been told this?

[RoseTapper]

Hmmm.... All I can of is that perhaps your diarrhea might be causing dehydration (??).

[kaitlyn77]

I picked up a copy of my lab results today. I was hoping someone can help me interpret the results.

IgA: 5 U/ml

IgG: 5 U/ml

IgA serum: 112 mg/dL

Endomysial Ab Screen: negative

Tissue Transglutaminase: <3 U/ml

Also my monocytes, MCH,BUN, and potassium were high.

Any help I greatly appreciate!!

[psawyer]

I picked up a copy of my lab results today. I was hoping someone can help me interpret the results.

IgA: 5 U/ml

IgG: 5 U/ml

IgA serum: 112 mg/dL

Endomysial Ab Screen: negative

Tissue Transglutaminase: <3 U/ml

Also my monocytes, MCH,BUN, and potassium were high.

Any help I greatly appreciate!!

Without the reference ranges (which vary by lab and test), it is not possible to fully understand the results. I am neither a doctor nor a lab technician, but my first glance says that is a negative for celiac. All the relevant numbers are low. IgA serum is a control to ensure that antibodies are present overall. If that is below normal, then the other test results are not valid.

TTG is the most specific test (and the newest)--at less than three it is likely negative. No test is perfect, and most produce some reaction to substances other than the one that they are designed for, which is why there is always a small, non-zero, number that is considered negative.

I hope that was of some help.

[kaitlyn77]

Sorry I forgot to include the reference numbers!

IgA: 5 U/ml negative: <11

IgG: 5U/ml negative: <11

IgA serum: 112mg/dL 81-463

Tissue Transglutaminase: <3 U/mL negative: <5

[psawyer]

Three negatives on the specific antibodies, with the control being normal.

[ravenwoodglass]

Sorry I forgot to include the reference numbers!

IgA: 5 U/ml negative: <11

IgG: 5U/ml negative: <11

IgA serum: 112mg/dL 81-463

Tissue Transglutaminase: <3 U/mL negative: <5

While your test results are negative please do keep in mind that the false negative rate is high, according to the NIH at least 20% of us have false negatives. Do be sure to give the diet a good strict try even with the negative results.