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Symptoms And Questions


endplusone

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endplusone Newbie

Hi all,

After various health issues over the past few years, I've started to question whether everything is fitting into a bigger picture. So, I've come here with some questions about my symptoms, and what I should do.

To give a bit of background... I'm a 21-year-old university student. I put a lot of work into school and experience high stress/anxiety as a result of that (and another traumatic incident that happened four years ago). I cannot remember the last time I had energy, or felt truly awake. I've been vegetarian since I was 11 years old, and my parents complain that this is the source of my health problems. However, I've also been told that I have had issues with iron since I was very young, so I do not think the vegetarian diet should be that much of a concern.

Within the past year and a half, however, I've been having very weird experiences with my health - what is definitely out of the ordinary. I would say it started last year around November. I started experiencing involuntary muscle spasms in my legs and arms. It went on for quite some time, and I honestly thought I was going crazy. I went to a doctor about it when I got a chance to pry myself from school and they told me to start taking multivitamins to deal with all of the deficiencies I was experiencing. I figured the deficiencies were due to my living arrangements at the time - I lived in a basement apartment and got little light, and was obviously not sleeping properly due to school. The vitamins didn't feel like they were working. While the spasms and tingling went away after a while, I still do experiencing them from time to time.

Within months (between November and February) I dropped about 20 pounds. I didn't particularly do anything to lose weight and that certainly wasn't an intention. I didn't even notice until my family visited and got worried.

For the past year I've also been having a few other issues. First, with my stomach and bowl movements (TMI, but hey this is a forum about health). I haven't thrown up, but I definitely have felt like it a lot. Again, I attributed it to stress over school. I figured school and tiredness was making me physically ill. Meanwhile, I was also having issues with my blood pressure. I have had to miss a few classes in the morning because I would step out of the shower and immediately have to lie on the floor, and stay there for a while. Also, nosebleeds and dry skin are pretty common. It could just be dry air, but last year the skin in my bottom lip split open and was like that for about 5 months - it was so difficult to heal.

This past summer was much better as I got to sleep more. However, once school started up again I started to experience more serious problems. In addition to stomach issues, I have had reactions to some foods, particularly the organic cereal I have and this one type of yogurt (I cannot remember the brand name). I found that to be very odd. Most of my diet over the past two years has been brown rice and vegetables, so I haven't noticed too many other reactions. Also, I started taking Spirulina to try to make sure I was getting enough vitamins and to boost my energy. A week after taking it, however, something happened. What really set off the alarm signal was the skin reaction I had in late September. My arm was in pain one night but I was on a bus on the way home and didn't think about checking it. I woke up the next morning and my entire elbow was swollen, red, and covered in very painful blisters. I immediately went to the clinic and they told me it was most likely an allergy from something I picked up in an environment. I was given cream to take care of it. However, it only worsened. Two weeks later I went back and they told me it was most likely Shingles; I was having a reaction to the amount of stress I was under. They did a swab and I went on my way. I forgot to check my results. Only recently have I returned to see my results - negative for Shingles.

Now this has left me very concerned. Later that day my Mom called me and told me she had seen Dr. Oz on TV talking about Celiac Disease, and they showed a picture of a rash and she recognized it as what I had. And here I am.

So as you can see, I'm very confused, because I don't know if I actually have a medical issue here that I've just been blaming my student lifestyle for, or whether I shouldn't be that concerned. The problem is that many of these symptoms I'm experiencing are either so normal for me (fatigue, stress, stomach problems) that I forget about them or attribute them to something else. The incidences have been so isolated I couldn't see the big picture. I'm just really tired of feeling so drained all the time. It's been normal for me, but I really don't think it should be this way.

Here then are my questions:

- Do these symptoms match up with Celiac Disease? I've read a bit online but I don't want to generalize according to my experiences.

- Is it possible that my symptoms are just a result of being stressed from school and or due to my vegetarian diet?

- Is it possible to have Celiac Disease and not experience noticeable or serious reactions to food? I've only had a couple of noticeable experiences.

- I'm visiting a doctor in a couple of weeks. Is there anything particular I should ask them?


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ksymonds84 Enthusiast

Hello and Welcome. The Dermatitis herpetiformis rash can look like shingles. Is it still active? If so you can ask for a biopsy again but specify you want to look for Dermatitis herpetiformis. Also, I would have a complete Celiac panel ran. Are you still eating gluten? If not the panel may come back normal. I would do all the testing that you can possibly do for celiac, if all comes back negative go ahead and try the diet anyway and see if it helps.

My daughter is 21 and also a celiac college student. She was missing school and work because of diarrhea and feeling like she was going to vomit everyday. I had her do the complete celiac panel, she was still eating gluten. Her panel came back negative but she refused to see my G.I. because she didn't want an intrusive endoscopy. She then tried the diet and now doesn't miss work or school and feels pretty darned good. Since I do have a positive diagnoses and two celiac genes (she has one for sure my G.I says) she feels confident that with her positive dietary response, she has it and will stick to the diet for life.

Hope you get your answers soon and keep us posted!

Jean'sBrainonGluten Newbie

Your skin reaction could be dermatitis herpetiformis (do a google search). In a way this is good news because if confirmed it means you don't have to make decision about blood tests and an endoscopy.

The leg and arm spasms could actually be a sign that gluten antibodies are at work in your brain.....

I didn't notice a reaction to wheat until I had been off it awhile and really resisted the idea of having celiac.

The sum of your symptoms are clearly more than ordinary stress. You may have to push to get the doctor to consider celiac. I would suggest printing out a photo of dermatitis herpetiformis to show your doctor. According to Dr. Peter Green, an Australian doctor now practicing in New York, celiac is only diagnosed in about 5 per cent of patients here, versus 30-40 percent elsewhere. SO be persistent but try to do so pleasantly.

endplusone Newbie

I'm still eating gluten - pasta, whole wheat bread, crackers are what I can think of, though I'm sure there's other stuff. I'm not sure if I am eating sufficient amounts, though, as a lot of my diet is brown rice. How long before I get tested for Celiac Disease do I need to be consuming adequate amounts of gluten for the tests to show sound results? Thanks for reminding me of this; my family suggested I stop eating gluten to see if I feel any better before going to the doctor.

The problem is that my skin has cleared up since somewhere around mid to late October. I have a bit of scarring, but nothing else has come back. I did take pictures though, so thank you for the idea of presenting those to my doctor back at home. I might go back to the clinic here and speak to the doctor who took the swab to see if he thinks it looked like dermatitis herpetiformis.

That's interesting, about my neurological symptoms and the antibodies. Though, it sounds a bit scary.

I know I've spoken to doctors before about my issues, particularly with the spasms and blood pressure, and they usually disregard it as important. The symptoms are difficult to present to a doctor because they're not very tangible. I suppose it could be a response to people coming to them with pre-fabricated ideas about what illness they have, as people like to diagnose themselves. Perhaps I should be careful when talking about the reading I've done on Celiac Disease.

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    • Russ H
      Hello, and welcome to the forum. Getting use to gluten-free eating is a struggle, but it is worth it. Your daughter should begin to feel much better and the fatigue will fade but it can take some time. I am sure you will get lots of suggestions from forum members - we have a few from the UK. I am a bit pushed for time just now but will come back later. Russ
    • Ginarwebb
      thank you so much for this information .. if I'm reading the results correctly I believe the range was  <15.0 Antibody not detected > or = 15.0 Antibody detected
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      My 16 year old has just been diagnosed with coeliac, she loves food and is now struggling with the diet. She has a variety of different co editions and thos one just tops the list, she is a musical theatre student at college and loves what she does but fatigue gets in way alot of the time, are there any good amd tasty meals I can k make that will help?  Thanks for reading.
    • BelleDeJour
      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
    • Scott Adams
      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
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