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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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    • Hi, you can try reporting your own post.  That should alert the site admin of your request.  I don't think they can delete your posts, but changing your user name may be possible.
    • Hi Pablito, Welcome to the forum! You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information. The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy. Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.
    • Research Celiac Ataxia for potential diagnosis. Look at Milk and dairy for potential head and sinus related issues.  I stopped dairy and I can breathe now! Saturated fat may also be a problem, but it's mostly dairy!
    • It is best not to try and do this on your own. Talk to your allergist. Not all will deal with food intolerances but if yours doesn't find one who will.  Mine had me fill out a very detailed diet questionaire and tested for true allergies before he gave me my starting point. I will admit I wasn't real happy with my starting point since none of my usual foods were on it. He said that I was most likely to react to foods I ate the most so most of the 5 I either rarely ate or didn't really like. The prescribed starting point he formulated was designed to make sure I had adaquate nutrition and enough calories.   It took about 2 weeks before a lot of my tummy issues resolved and I was then able to start adding foods in one at a time for a week before moving on to the next.  He said food intolerance reactions can take up to a week to show up so I had to be sure it was a full week between food additions. I did have to call three offices before I found a doctor who could do the formulation of the diet but this guy truely saved my life. Out of all the doctors I had seen, including specialists in big hospitals, he was the one responsible for finally realizing I was celiac. He of course referred me back to my clueless GI doctor who confirmed the diagnosis by almost killing me with a gluten challenge. I should note that some of my intolerance (not gluten of course) did resolve after I had healed. Even dairy which I hadn't been able to have for years! I hope you can get some answers and are able to heal soon.
    • I'm 43 years old. I'm married and have two teen daughters. After all these years it was one of my daughters who tonight said to me: "you probably have Celiac disease" after hearing my wife and I talking about all the pimples I always get on my arms. I never heard of the disease but I have heard about a lot of people having gluten allergies and didn't know they were the same thing. So I started looking it up on the internet. Turns out I have had all the symptoms all my life and no one has ever said anything about it possibly being Celiac disease. When I was a kid my doctor gave me prescriptions to antibacterial soaps to use for the arm pimples. Hibitane I think was one of them. And I've always had swollen looking ankles as long as I can remember. All my life people have noticed it. As a kid and teen I played lot's of sports and have broken my ankles and sprained them so my mom and I brushed it off at that and so did my family doctor when I was young.  But I always thought it was weird that the swelling continued all these years.  I have had a bloated feeling stomach all my life too and chronic diarrhea. My stomach is always hard and swollen feeling. Not ever knowing what that stuff was related too so I have never mentioned the bloat or diarrhea to a doctor. Just kind of embarrassing I guess. As my wife and I were reading about Celiac Disease on the internet together tonight she pointed out to me that that's probably why these symptoms almost all went away when I did a very low carb diet for about a year straight to lose weight a couple years ago. I had solid bowel movements, no bloat, ankle swelling went down but I thought the improvements were from weight loss and just eating healthier . But perhaps in reality it probably had a lot more to do with not eating all the wheat products/gluten products. So tomorrow I will be seeing my doctor to talk to him about it and to ask for the blood tests. I have read that I should continue eating gluten though until my testing is done. So that is crappy but I guess it's better to know for sure. Something else I think I should point out too is that I get headaches quite a bit after having big meals. Now I am thinking that may have something to do with the gluten too. I have read that some people with Celiac also get headaches with the other symptoms. It's great to see there is a forum like this to help people out with these issues. If I test positive for Celiac I will for sure be following this forum closely for advice and diet/nutrition help.
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