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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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    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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