Angel1234 Posted November 12, 2013 Report Share Posted November 12, 2013 Hello everyone! I am new to the forum. Symptoms started back in May 2013. Told by several docs that I had a severe generalized anxiety disorder. Have an MEd in counseling, but started to think that I did too! Finally went to Cleveland clinic in south florida where an AMAZING neuro who specializes in the disorder sent me for autonomic testing. TTT, QSART, and Val. Maneuver all positive. She feels my condition is most resembling POTS although is hesitant to put me in that category because she says my condition is mild- even though it feels severe when it's happening you know? Anyways, she wanted to find an underlying cause especially since 6 years ago I had urticaria that was unexplained on and off for 2 years. Went through more testing- yesterday found out I have celiac disease. I feel foolish because the signs for this disease have been there on and off for YEARS. . .maybe like 7-8. I also have many, many nutritional deficiencies and now know why. Has anyone else been diagnosed with celiac as well? She is hopeful that addressing my celiac will improve my dysautonomia. Any luck with gluten free diet for anyone else? How long before you saw improvement? I have a toddler and hope to regain my energy and ability to stand for longer periods soon. . . Toddler doesn't understand and it makes it so hard. By the way, anyone in south florida thinking they have this please go to cleveland clinic! I went through 2 ER visits and several doctors before going there and have been SO happy with my experience. My neuro is very knowledgeable. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted November 12, 2013 Report Share Posted November 12, 2013 Hi,I'm sorry I don't know anything about celiac disease, but I just wanted to say welcome to the forum!It's nice to meet you, I've had autonomic testing and been told 'probably POTS' too. I hope you'll be able to find some relief from your symptoms soon.Best Wishes,Lyla Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted November 12, 2013 Author Report Share Posted November 12, 2013 Thanks, Lyla! Wish you the best as well. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted November 12, 2013 Report Share Posted November 12, 2013 Hi Angel, Welcome to the forum! I hope the new diagnosis & gluten free diet will help you to feel better! There have been forum members (both with and without the Celiac diagnosis) that have reported improvement with a GF diet, so I'm sure you'll get some good feedback from them. Would you mind sharing a little more about the signs you've had over the years and the nutritional deficiencies? Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted November 12, 2013 Author Report Share Posted November 12, 2013 Thanks for responding!Going on for about 7-8 years have had stomach pain after eating certain foods such as spicy, fried, sweets, etc. indigestion, constipation, belching, heartburn. . .thought the last year these symptoms have been more prominent. It's now on a daily a basis. 6 years ago had "wheals" which are hives that appear under the skin not raised on top, on bottom of feet only on and off for about a year or two. Since then, have only had about 5 wheals randomly appear same area and at different times over the last four years.Last May started having tachycardia episodes, lightheadedness (this is what brought me to a doctor), floaters in eye, flashing light in peripheral vision whenever I lay down at night, brain fog, extreme fatigue, exercise intolerance, shortness of breath. These are all my symptoms we believe are related to dysautonomia; however, I just completed pulmonary testing because one of the specialists suspects asthma which would make sense because I have ALWAYS had intolerance when running and so forth. (Heart has been checked out several times- echo, numerous EKGs, 24 Hoosier monitor, and 2 week instantaneous recording device, chest X-ray. They found episodes of tachycardia, of course!, but everything is normal with heart besides. Nutritional deficiencies- ALL b vitamins are low, zinc, and vitamin d. We now believe this is because of the undiagnosed celiac. I was on florinef, but insisted on trying to go without it and I am no better no worse not taking it. Plus it made me gain 12 pounds after one month! Been off about a week now. Just now starting to go gluten free, am on herbs for adrenal support and soon gut support, dr. Ohirras probiotic, multivitamin, b complex, zinc, add pink Himalayan salt to a lot of my food, and drink Himalayan salt solution every morning. Plus every day have a greens and pea protein smoothie. My neuro is also in touch with Dr. Levine to get his exercise protocol for pots patients. As last week I was feeling so great I decided to do 30 minute power walking cardio 3 days in a row and on the 4th day was so lightheaded couldn't barely function. That was a wake up call that I can no longer be an overachiever in certain things and need to slow down. Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted November 12, 2013 Author Report Share Posted November 12, 2013 I also have some days when I feel completely "wired but tired" like I am fatigued but my adrenaline is surging. I brought up hyperadrenergic POTS to my neuro, but she thinks that I should be worse off with my symptoms if that was the case. She tells me my autonomic system is working at 90% compared to normal person with 100%. And I don't have blood pressure has ever been actually high or low. When it does fluctuate it is border lines. I have been told to stop searching for answers because she thinks my anxiety is starting to play a role in all this as well. I know she is right! Quote Link to comment Share on other sites More sharing options...
corina Posted November 12, 2013 Report Share Posted November 12, 2013 Hi Angel, welcome to the forum! Hope that working on your celiac disease will help you get things in control! Quote Link to comment Share on other sites More sharing options...
kayjay Posted November 12, 2013 Report Share Posted November 12, 2013 Also gluten free- "presumed" celiac but no scope. I can tell you that I was told I had IBS- gluten free has almost eliminated ibs syptoms. I have dysautonomia related gi issues at time but I have been able to correct nutritional deficiencies.For me a gluten free diet has been one of the best decisions I've ever made. I'm excited for you because changing what you eat is very doable! Quote Link to comment Share on other sites More sharing options...
badhbt Posted November 12, 2013 Report Share Posted November 12, 2013 Wow, thank you for posting. I am so curious to know how your symptoms change on the diet, please keep us informed.Can you tell me how they diagnosed you?Please know that Celiac disease is genentic.... Here is a episode from Mystery Diagnosis on Celiac Diseasehttp://theglutensummit.com/david-perlmutter-md-facn-abihm/ Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted November 13, 2013 Author Report Share Posted November 13, 2013 Thanks for replying! I was told that it is genetic. I plan on asking the GI doc more about that next week. Funny thing is my sister has some issues as well, but neither my parents ever have foods phase them. Maybe it stays dormant in some carriers? Idk. Interesting. . .my neuro ran several tests and sent me to a rheumatologist to make sure there was no underlying autoimmune issue since she knew about the "wheal" episodes years ago. I was tested for lupus (extensively), sjorgrens, Lyme, and some others. . Gliadated IgA test came back positive which indicates a gluten sensitivity or intolerance. So they decided to look further and test my TGG-IgA. It came back positive. With this test, all negatives still have to have further testing because you can still be celiac and have negative outcome. But you cannot have positive outcome and not be celiac. . .make sense? I haven't had biopsy and as of right now do not plan on letting them do one. I don't see it changing what I have to do about the disease and getting anesthesia with POTS scares me. Quote Link to comment Share on other sites More sharing options...
looneymom Posted November 13, 2013 Report Share Posted November 13, 2013 Hi Angel,Welcome to the forum. It's good to hear that you had a good experience at the Cleveland Clinic. It sounds like you may be headed in the right direction. My son has POTS but I am in the process of trying to get him tested for celiac. Keep us posted on your progress.Rachel Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted November 13, 2013 Report Share Posted November 13, 2013 Welcome Angel, I was diagnosed with celiac in March while at Mayo clinic. Going on a strict GF diet was been one of the best things for not only GI symptoms but also many POTS problems. I started to notice changes with GI symptoms right away, but it took about two months for real changes to start in other areas. If you look at previous posts, there has been other conversations about this. I wish you all the best. If you have any questions feel free to PM me. Shona Quote Link to comment Share on other sites More sharing options...
pink1975 Posted November 13, 2013 Report Share Posted November 13, 2013 Hi Angel. I also have both POTS and Celiac although I got my Celiac diagnosis about 2 years before the POTS diagnosis. I don't notice the POTS symptoms improving with gluten free diet, but boy can I tell when I have an accidental gluten-ing! Then I am sick on top of being POTS-y. Not sure if the diagnoses were in reverse order there would be a marked difference. Also, if you don't want to get the biopsy, then don't sweat it. I had that done and it was no picnic. Just going gluten free and improving should be enough evidence. Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted November 13, 2013 Author Report Share Posted November 13, 2013 Hi pink! Thanks for the response. That's good to hear about the endoscopy! Hoping he gives me a choice next week. . .but I did talk to someone else on here who said it was the only way that they found an ulcer she had. So idk. . .we will see! I have to say only a few days being off gluten and I have been feeling terrible. I guess my body is in shock from gluten withdrawal! Nonetheless, I see rainbow at the end of the tunnel. Quote Link to comment Share on other sites More sharing options...
angelina Posted November 13, 2013 Report Share Posted November 13, 2013 Hi, Just a side thought... when your doctor found your malabsorption issues, did he/she put you on any supplements like folate, Vitamin B's, or Vitamin D? This can make a big difference with your energy level and some POTS symptoms. Also, many things may be gluten-free, yet are processed in a facility that handles other gluten containing products thus cross contaminating them. A product is only truly gluten free if it contains the special certified gluten free label which states it has been processed in an allergen free facility. Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted November 13, 2013 Author Report Share Posted November 13, 2013 Hi Angelina! Yes. I was put on a more potent multivitamin, a b complex, and zinc supplement. I need a vitamin D! Thanks for reminding me. LolI also just learned about the GF seal. Gosh- this is all so overwhelming. As if having pots wasn't enough! HA hope this becomes easier as I get use to it. On a side note- were you diagnosed with celiac? If so how did GF diet do for you? Quote Link to comment Share on other sites More sharing options...
angelina Posted November 14, 2013 Report Share Posted November 14, 2013 Angel1234, I have experienced severe gastritis and intestinal issues for years, but never had a pinpoint diagnosis for why the inflammation. The MCAS diagnosis is the closest I have gotten to figuring out what is wrong and why I have progressed to more severe dysautonomic problems as well as malabsorption. Some things have alleviated a few of the GI symptoms such as going GF, limiting histamine rich foods, adding SAMe to my daily regiment, etc. I feel that if I can control the inflammation and get my anemia under control then many of the other pieces will balance. Quote Link to comment Share on other sites More sharing options...
looneymom Posted November 17, 2013 Report Share Posted November 17, 2013 Hi Angel,Just wanted to know how you are feeling on the diet. My son is going to be tested this next week for Celiac. However, the cardiologist wants me to go ahead and give the diet a try with him after the testing. So I have started looking for recipes and trying to create a menu for a couple of weeks. Are you going off the gluten and dairy products or just gluten?Rachel Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted November 17, 2013 Author Report Share Posted November 17, 2013 Hi Rachel! I have been gluten free for almost a week now and honestly have felt bad. Just so you know I have had a cold though so I am sure it's been a combination. However speaking with my neuro and my sis in law who is a hollistic practitioner- they both say my body will detox and I most likely will feel worst before I feel better. I found that link that someone posted earlier on this thread about the gluten summit so interesting! And last night I ordered the book the brain grain. I feel very strongly that my dysautonomia is linked to celiac and have done alot of research and found studies that definitely find a correlation. A suggestion about meals gluten free. There is a website called emeals where you choose your meal plan and every week they send you a grocery list and 7 recipes for the week. I did this last year for their clean eating plan and loved it! I am about to subscribe to their gluten free plan and try it. Might make things easier?! FYI- I have seen alot of groupons for their service. Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted November 17, 2013 Author Report Share Posted November 17, 2013 Oh sorry- for now just gluten. I am going to see an allergist next week I used years ago and see about any other possible sensitivities. Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted November 17, 2013 Report Share Posted November 17, 2013 Hi All, just thought I would mention a couple of things that really help to transition to GF. A web sight called glutenfreedrugs.com is invaluable. It is amazing how many meds have gluten in them! Mayo suggested this sight, and I am so glad they did. My GP argued with me about gluten in meds. Said he had " never heard oh such a thing". So glad I was able to show him.......Also a book called the " Gluten Free Grocery Guide" by triumphdining.com. This makes shopping for groceries so much easier. Quote Link to comment Share on other sites More sharing options...
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