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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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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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