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I Don't Know Where To Go From Here.


student314

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student314 Rookie

I was feeling so encouraged...I had been to my university health clinic twice for my digestive issues. I finally convinced them that it might have been more than anxiety, and they ruled out other things in blood work, and the only thing that came back was that my blood iron is low (no anemia yet though), my ferritin is 2 points from being low, and my B12 was 243 (the range was 180-1000, but I've read in many places elsewhere that the low range should be higher in labs and 243 doesn't exactly scream "definitely high enough" in that range anyway). 

 

I went to the doctor, had the gall to mention gluten, and she immediately said "Oh, you don't have celiac. WHO mentioned that to you?". Mind you, I am a COMPLETELY new patient and all she knows about me is that I've been having diarrhea problems. She blew the anxiety and racing heart after eating off. She said that the diarrhea persisting for 7 weeks definitely isn't because of anxiety like I had been told a couple weeks ago though--The only positive. She wants to test my stool for bacteria or parasites. I am so frustrated/discouraged/angry. I can't afford to keep going and seeing doctors like this. I've lost ten pounds in the last month and 15 since the beginning of the summer. NEVER EVER in my life have I been able to lose weight without trying.This doesn't seem to concern any doctor though. 

 

I just don't know what to do now. My symptoms seem to cycle around my menstrual cycle (my symptoms calm down for a week before my period but then once it starts, it's full go diarrhea, racing heart rate after eating, constant stomach pain for the next three weeks. So I've only had mild symptoms this past week. It's about to start though and I'm dreading the miserable three weeks I have ahead of me. I don't know if this was to just rant or what, but I would appreciate ANY advice. This definitely doesn't seem like something a 19 year old should be dealing with, right? I wonder sometimes if I'm trying to make something out of nothing.

 

 


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1desperateladysaved Proficient

Those symptoms that you have, I would  have trouble blowing off!  I have done some of them and it wasn't fun.  It is possible that a parasite may be causing you trouble, so you may want to get the results of that testing and see what happens.  If that is negative, or the treatment doesn't solve the problem, I would look for a doctor that is willing to help you.  Perhaps you can get a consultation to see what their attitude and knowledge of celiac is like.  Sometimes people post their location on Celiac.com and see if anyone knows of a doctor in their area.

 

Best wishes and get diagnosed and well,

 

D

Salax Contributor

Dang girl you sound like me. I would recommend a food journal. And once your done testing, I would try an elimination diet. Have they tested your thyriod?

student314 Rookie

The clinic at my university just tested my TSH. I've gone through that battle of getting fT3 and fT4 tested before with my doctor at home, and I didn't really feel like pushing it with the clinic here since I was already pushing to try to get tested for Celiac. That would have been a whole other war to have with them. The doctor I went to of course took one look at my TSH (it was 2.17) and said I was fine.

 

The icing on the cake with the doctor was when she looked at my iron level of 35 (minimum is 50) and said it was a normal occurrence for "a menstruating woman" and moved right on. The clinic at school at least had the decency to call me to tell me it was low and to take supplements.  To be honest, I don't even know how a doctor could sit there and listen to my symptoms and not want test for SOME kind of food intolerance either...

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    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
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