Tick a lot of boxes for celiac, convinced it's a possibility!

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Hi guys. I'd really like your advice as I'm not coping at the moment with my health that is just deteriorating and going further downhill. I started getting a lot of symptoms in late 2011/early 2012 after a period of stress when I kept having panic attacks about my relationship and then was hospitalised with a heart rate of 170. They were satisfied that it was psychological, and I was sent home. But I continued to be in emotional distress as I have an anxiety disorder and depression, and I noticed some sudden physical sensations that I'd never had before. These were mainly indigestion/acid reflux, and a head that felt strangely fuzzy, a little light, but heavy at the same time. I became sensitive to heat, to the sun (it made me feel light headed and dehydrated), and noise and light. Muscle pain also started, and I got weaker, very weak. 6 years on, I'm still dealing with all of these things. The acid reflux is the worst and I'd open the sky and move the heavens to be free of it. I've had an endoscopy for it, a barium, and now a manometry. I haven't had the results of the manometry yet, I'll find out when I go to the hospital in March. PPI's have never even touched it, and I've been on them all at least twice, including a H2 blocker. As for my head, I was given iron and vitamin D, as I was fairly low on both, though not much, but they made no difference to my dizziness. I had a 24 hour blood pressure monitor. Totally fine. And as for my muscles, "exercise more."

Last summer it was suggested that I might have celiac disease, so I had a blood test. Negative. A couple of months later I saw the gastroenterologist at the hospital, who sent me for another one as I tick so many of the boxes. Negative. I've read up on the disease over the last few months, and it's really stuck in my head as it describes my symptoms very well. When I had the blood tests I was eating gluten twice a day, toast for breakfast, and bread with dinner. I wasn't having lunch then, and my snacks were usually dairy. I really want an endoscopy to make certain, but I don't know if my gastroenterologist will go for it as I've had two negative blood tests. I must say, my dad has had chronic fatigue syndrome/M.E and fibromyalgia for 20 years, and he is convinced I inherited it from him. I am considering this too as my symptoms also describe CFS. Celiac and CFS seem to have very similar signs. My dad's doctor wanted to test him for celiac disease, but for some reason nothing came of it, and my father never heard anything about it. 

I think I've waffled on, so I will list my symptoms, all started at the end of 2011 or the first couple of months of 2012 after my panic attacks. 

-Severe acid reflux

-IBS (intolerance to FODMAPS and certain fruits, vegetables; constipation; sometimes loose stools; occasionally stools are a pale, light colour; a lot of gas, popping, bubbling; cramping and pains)

-Head feels funny, light, fuzzy. I have not been able to twirl in a circle in years, and my head feels very strange and uncomfortable in elevators. It feels worse when it's sunny out. Also get headaches 

-Muscle pains, some joint pain, severe muscle weakness 

- Sensitivity to heat, noise, and light. My cinema choices have been limited since 2012 as the booms and crashes make me very light headed

-Allergies. Before 2012, I had summer hayfever in reaction to grass pollen. Since all these symptoms came on, I've also been allergic to tree and weed pollen, maybe more. I always have congestion and a runny nose

-Acne and severely dry skin. I've always had a problem with acne since I was 12, however, it gave me a nice break until 2012 when I suddenly developed severe infected acne. My skin also suddenly became very flaky

-Mouth ulcers and gum problems. These started in 2015, and I had at least 3 mouth ulcers last year

-Low on iron, vitamin D, and now B12. I have to get B12 shots every 3 months

-Fatigue. I can't believe I forgot to mention it! I get dog tired doing absolutely nothing. Sleep is unrefreshing 

I recently had a strange reaction to Greek yogurt, which I never usually eat. I got diareahh and was sweating all over, and was readying myself to pass out. I eat regular dairy fine, so I don't understand what happened with the Greek yogurt. 

Thank you for reading. The IBS and fatigue seemed to get worse after adding some lunch into my diet, and biscuits. I have bread rolls or pancakes for lunch, and noticed I was going more often after I added rolls to my daily diet, but that might just be the fibre. I just really want to get to the bottom of all this now. I feel awful. 

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  • Posted

    Hi Pixie.....not to nay say your Dr. but my GP said blood work is not the tool to test for Celiacs. The only test is a Colonoscopy and biopsy of the bowel lining. So you may have to insist on the scope if you want an accurate diagnosis. I have had celiacs for all of my life and ignored all the symptoms...GERD, anemia, constipation etc. Massive vomiting and spasmodic pain got my attention real quick so now no more gluten for me. Due to years of damage in my bowel I have nutrient absorptive problems, thereby the anemia, low B12 etc. I made the fatal mistake years ago of taking chemical mediation for GERD and ended up with a severe B12 deficiency as the meds prohibit the absorption of the vitamin (something they don't tell you).

    now that I have gluten totally out of my diet I feel much better but the healing will take time.

    g

    Good luck

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    • Posted

      Thank you so much. I get a pang as you mention GERD which is my number 1 symptom and I have cried so much about it, but I wasn't sure if GERD/acid reflux was a symptom of undiagnosed celiac disease. I have read a little about PPI's causing low B12, I have been getting the jabs since last summer and they acted as if it were surprising to be low on it, despite years on and off PPI's. I do not trust those drugs at all. 

      Is only an endoscopy necessary or do you have to also get a colonoscopy to diagnose celiacs? I can do an endoscopy again, but a colonoscopy I am afraid of... 

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    • Posted

      The colonoscopy was what my GP said is the only correct diagnosis for Celiacs and I do agree it can be dangerous if the doctor performing the procedure is unskilled. So if you decide to do it make sure you get a highly skilled doctor. The GERD will decrease greatly once you remove gluten. Your body only has so many ways of telling you not to ingest something and GERD is one of them. I also control the amount of processed sugar in my diet as that causes instead GERD. 

      Stay positive and remove gluten for good and you will get better quickly....if indeed you have celiacs.  Consider supplementing with vitamins as celiacs don't absorb  nutrients very well due to villi damage in the bowel.

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  • Posted

    Hey Pixie, your post struck a chord with me for few reasons. Firstly i was diagnosed with chronic fatigue syndrome 20 years ago and have struggled with numerous symptoms, many of which you mention. I have seen numerous specialists in the NHS and privately all of whom labelled with with CFS and didnt investigate further. After so many years of struggling and not really improving i pushed for more tests and was finally diagnosed with coeliac disease about 2 months ago. Now that I am GF the tiredness, brain fog, nausea amongst other symptoms have improved. Unfortunately doctors don't always have the answer and I think you should request an endoscopy and see where that takes you. Alternatively as you are having some gastro issues you can try going GF and maybe lactose free to see if that is ca using your symptoms. Best of luck!

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    • Posted

      Thank you, that is something to think about. I know that a large percentage of people with celiacs are undiagnosed, which is quite worrying. I wonder why they don't look into it? Do they rely too heavily on the blood tests and dismiss the possibility after a negative result? I definitely want an endoscopy to make sure, but I'm worried the gastroenterologist might say no. I'm not very assertive so I'm worried I will come out of the appointment in tears with no plans to investigate. I will write down my diet to show him. 

      Would someone with undiagnosed celiacs get symptoms right after eating gluten? I'm convinced I get severe reflux after eating rolls and I'm wondering if I should stop eating them for a few days. But if I do get an endoscopy I might need to eat lots of gluten daily before the test, or is that only for a blood test? I've started looking down at my bread as though it may be evil! 

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