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I'm New To This & I Really Need Help!
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Hi everyone, my name is Josh and I'm 23 years old. I'm new to this forum and to Celiac disease, I haven't got an official diagnosis yet but I know I'm barking up the right tree.I used to weigh 310. I've lost 80 pounds in the last 8 months but I started having symptoms about 3 months ago, It was hell on earth. I just woke up one day with really bad brain fog, diarrhea and mucus in my stool (Sorry if TMI) and I just felt really lethargic and had. I had light sensitivity and a host of other symptoms. As the next few days went on things just got incredibly worse. I went to the ER and they told me I was dehydrated and my potassium was low, gave me a saline drip and sent me home. Went two more time in the next couple of months and nothing. I went to my doc and he ran some tests and my thyroid levels were:

TSH 0.63 uIU//mL

Free T4 0.82 ng/dl

Free T3 2.50 pg/mL

My doctor said it was fine. One day I realized that I always felt really bad after I ate. If I ate something high in gluten I would have a physical allergic reaction and get so mad for no reason. So I did some research and I tried to elimnate gluten as much as possible. I started to feel better but not back to normal. The brain fog lightened up, the light sensitivity went away, my stool was more normal and I had a little more energy and I wasn't getting mad. I only got the mucus if I got glutened. This lasted for a couple of weeks and now it's almost like being back at square one. I'm not eating gluten but I get the mucus and the brain fog has gotten a little worse, I'm fatigued. This biggest thing for me is the brain fog and memory issues. My short term and long term memory haven't been good. Sometimes I have to work hard to remember details from a couple of days before. I remember things that happened a long time ago but my thought a really fuzzy so it makes it difficult. I've also lost interest in things I used to love.

I'm seeing a new doctor and he sys it sounds like some sort of malabsorption. He was the first doctor to actually listen. It felt so great to have someone take me seriously. He ordered test for my B12, Folic Acid, Vitamin D, Iron, Ferratin, and 3 gluten antibody tests. It's been a few days and I'm still waiting to get them back but they shouls come soon. I also have a lot of undigested food in my stool. If I eat spinach, I see spinach, I saw a whole sweet pea one time. I bought some plant based digestive enzymes but they haven't arrived yet. Do you think they will work? I know I need to get some vitamins but I'm very low on cash so I only ordered the enzymes because I felt they would help to get to the source of the problem. Has anyone else had memory issues? If so how long did you deal with it, how bad was it and did you recover? I just want my sharp mind and clarity back.

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Was the weight loss intentional? What is your labs free t ranges?

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Be aware that if you have been eating gluten free, the blood tests will likely be negative. The antibodies will only be present if you are eating gluten.

Sounds like you are on the right track, but maybe you are still accidently getting gluten. I had a set back early in the diet and began to question if I was on the right track. Turned out that there was gluten in the B vitamin I was taking. Even the smallest amount - like from cross contamination - can keep you feeling sick.

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Thank you guys for replying. Yes, the labs were free T's and no the weight loss was not intentional. I read that as long you haven't been gluten free for too many months the antibodies will still show up. I considered cross contamination but I try to thoroughly wash everything before I use it. I'm hoping to start with a multi, B12 and some digestive enzymes asap.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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