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Another N00B


cO-ol

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cO-ol Explorer

Hi everyone. I'm 21 (My mom was still woozy from the anesthetic, ok? xD). I guess I'll start off by saying I like terrible jokes.

It started with seeing a doc about the slight dizziness, fatigue, and numbness in my feet about 3 years ago. After blood tests, the only thing wrong was "Your b12 is a little low." It was about 305. I give her props for seeing that 305 is not ok, because apparently too many docs don't.

My fatigue got MUCH worse, and I felt lousy. I was often moody. I've read that can happen if you have nerve damage from deficiency. I saw a doc and she wanted to push an antidepressant on me.

I've gone through cycles of feeling better, worse, better, worse. One thing that's consistently gotten worse? Depression and anxiety. I also have developed a slight stomach pain whenever I eat (and it really doesn't matter what I eat; every food makes me feel this way). At one point it got bad enough that I was vomitting and thought I had appendicitis! That was last June, and it never got that bad since, but never completely went away, either.

The depression and anxiety have gotten bad enough to interfere with my job. My boss demanded I see a doctor, who took blood tests. The only thing wrong was my vitamin D levels. She figured it was depression.

I just don't think Major Depressive Disorder (or Generalized Anxiety Disorder) is my problem. The more I read about Celiac, the more sense it makes. Bad things I've felt that I just ignored/shrugged off (like heartburn) I've seen on symptom lists.

Other symptoms I've dealt with: Screwed up hunger cues (sometimes I'm nauseous and hungry at the same time; sometimes I can't eat enough; other times I have no appetite), itchy scalp, the PMS from hell, and occasional poo problems. I also think I might be lactose intolerant (other foods make me gassy too though, I think...).

However, I've considered trying to go gluten-free, and it's HARD. I can't do it on my own. There is NO WAY. I'd need a *LOT* of help, and I don't have a single clue on how to get started (I can't just live on fruits and veggies [i'd go hungry... I know from experience] and I hate cooking :( ). I'm one of those people who'd need a diagnosis to stay motivated. How do I find a doc who'll take this seriously (none have so far)? What do I do if I can't? Could I just go straight to a dietitian? What if that doesn't work (only two are covered by my insurance)? Is there anything non-Celiac that could be causing this? How do I talk to a doctor (maybe that's my problem)? I also am making barely over minimum wage here, though I live with my parents, so I don't have a lot of money to spend on going doctor to doctor(and I live in the U.S. with the BEST HEALTHCARE SYSTEM IN THE WORLD my butt.)


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ravenwoodglass Mentor

You may want to go back to the doctor and ask for a celiac panel. Do it before you go gluten free as you need to be eating gluten for the tests. Celiac disease can cause depression and anxiety due to the antibodies action on the brain. There are quite a few of us who have gotten relief from that type of issue once gluten free. You low B12 and D are often part of the celiac picture so that and your symptoms should be enough for your doctor to agree to test.

After testing a trial of the diet is needed even if the tests come back negative. That is best done with whole unprocessed foods. There are folks here on the board that don't really like to cook all that much and you can get lots of tips and ideas to make stuff that is safe and tasty.

Read as much as you can and feel free to ask any questions you need to.

cO-ol Explorer

I went to this doc on recommendation, but she's so far away and really not worth the drive. But I guess I can call a bunch of offices nearby and see what their knowledge of celiac is.

ravenwoodglass Mentor

I went to this doc on recommendation, but she's so far away and really not worth the drive. But I guess I can call a bunch of offices nearby and see what their knowledge of celiac is.

You might be able to have her send you a script for the test if she is familiar with your history. If not a General Practioner or Internist as well as an OB/GYN if your female can order the celiac panel for you.

If you can't get to a doctor and need to just go gluten free on your own there are lots of folks here willing to help. In some instances the changes we see in a couple months in the way we feel both physically and mentally can be motivation enough along with the reactions to a few accidental glutenings a long the way. It is hard but when you feel better it is very much worth the trouble.

Skylark Collaborator

Your symptoms sound very much like mine. GI trouble, deficiencies (I had anemia), major depression with a lot of fatigue, and carpal tunnel syndrome. The depression eventually turned into bipolar illness in my case. Depression can absolutely be celiac disorder. In Finland folks with depression and GI symptoms are generally screened for it.

You could try ordering a Biocard kit. Open Original Shared Link They have a phone number for U.S. residents to call and order. It's only one of the many celiac blood tests, but if you come up positive you have a pretty good indication.

It does make sense to try the diet for real. You cannot be tested off gluten, but the tests have about a 20% false negative rate and do not catch gluten intolerance. Gluten intolerance can make you every bit as celiac and some doctors think it's an early stage of celiac that just doesn't show up on the blood tests. The only way to know for sure if gluten is your problem is to do the diet strictly.

Sorry, but if you're gluten sensitive you're going to have to learn to cook. There is really no way around it, as a diet of processed foods has too much gluten cross-contamination. You can get all the help and support you would like from this board - that's why we're here.

SGWhiskers Collaborator

If you decide you want the celiac panel and the doctor says no, please ask them to make a note in your chart that you requested the celiac panel and they said no. I've never had to do this when I'm direct about what I want, but I like this idea for cutting through the run around you might get while diagnosing this disease with confusing symptoms. Yes, you could absolutely have depression or some other problem. Yes you could also have celiac. Yes, the celiac could be causing the depression or other problems. The doc may not be wrong, but not entirely right either.

I went on antidepressants years ago and they were the right move for me. 2 years into my celiac diagnosis, I'm functioning in the summer without antidepressants. We'll see how the winter goes. My medical bills were cut drastically by going gluten free which helps defray the cost of the more expensive fruits and meats.

Ask for the celiac panel at your next office visit. Don't get talked into a wait and see approach. It will cost more in the end. It is OK to get the panel and to try another of your doctor's ideas on the same visit. It's also possible you don't have celiac and it will save money to try it your doctor's way while you wait for the test results. I would agree that a serious gluten free trial for 3 months would be of value even if the results of your celiac panel are negative.

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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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