Calling Expert Celiacs!

[Glutin-Free Man]

I can't even express how angry I am after seeing this immunologist! I really am at breaking point with doctors! Cab anyone figure out these recent blood results for me please?

IgG- 11.94 (6.0-16.0)

IgA- 3.4 (0.8-2.8)

IgM - 1.05 (0.5-1.9)

ANA Anti nuclear Antibody- Hep 2 Positive homogeneous

I went to see this immunologist thinking that my endo might have ordered me celiac tests and it look like he hasn't done the relevant ones needed. So I'm no closer to a diagnosis and have no clue as to whats wrong with me again!

The dr said not to worry about the out of range results as 'some people are like that'! when I said well I don't feel well so obviously theres something wrong he just smirked at me and said 'there's nothing wrong with you, you might have had a virus'

Anyone any ideas?

Have I even had the right tests for celiac? or should I just go back on the bread and forget about all of this! sorry just so wound up about all this!

Hi Katie,

Sorry to hear you're having so much trouble. I don't know whether this will help you, but here's my story:

I had no problems that I noticed until I got close to 40, then I started noticing that I didn't feel well.

I couldn't even define what felt wrong, so I didn't see a doctor for it at first. Over time, I noticed that my periods of not feeling well coincided with the food I ate. If I had a bagel for breakfast, I'd feel dizzy, nauseous, and out of sorts for an hour or two, then feel more normal again.

I thought maybe I had some early symptoms of diabetes, as my father has Type II, so I saw the doctor, mentioned my worries, and had some blood tests done. I showed up as normal for all the tests that were performed.

At this time, my chest pain started to worry me. My cholesterol was high, so my doctor prescribed a simvastatin to reduce it. At one point, I ended up checking myself into the ER for chest pains + heart palpitations. They put me on a heart monitor for an hour or so, then sent me home. That episode prompted a stress test (running on a treadmill) and sonogram. The nurses afterward commented that I was one of the healthiest people they'd seen in a long time. No problems were discovered.

I kept feeling ill, and started keeping a food diary. My AHA! moment occurred one evening when my wife was out and I was watching the kids alone (3 & 5 at the time, so needing a fair amount of concentration). We had spaghetti for dinner, and I felt really woozy afterwards. I was dizzy and nauseous - much like having had 3-4 beers, but without the good feelings associated with that. I'd had no alcohol. It was pretty scary, considering I was alone with two small children.

I noticed then that all my episodes appeared to correlate to wheat products.

I called my family physician the next day, and told her I thought I might have a gluten problem. She told me to try eliminating it from my diet, and see whether I felt better. (btw: That's probably considered bad advice by many, as it will influence the blood tests - I considered it so for a while, but now I'm not sure any more.) I eliminated gluten for my diet for a week, and felt better than I had in a long time. I told my doctor, and she sent me to a GI specialist. It took 2-3 weeks to get an appointment with him, and I felt better on the gluten-free diet, so I kept it up. When I saw him he asked about my symptoms. At the time I was experiencing severe stomach pain, nearly constant gas, early satiety (I'd eat less than 1/3 of a normal portion at dinner, then feel so full I was unable to eat anything else), chest pains, blurry/double vision, and the aforementioned dizziness/nausea when I was eating gluten. I'd also lost about 30 lbs. in the previous month or so.

The specialist completely ignored my neurological symptoms (dizziness, blurry/double vision), concentrated on the GI symptoms (stomach pain, gas, early satiety), and dismissed the chest pains as GERD.

He put me on high strength antacids (Prilosec) and scheduled an endoscopy and blood tests. I mentioned that I'd been on the gluten-free diet for almost a month, and that according to what I'd read, that would affect the blood tests. We agreed that I'd eat gluten again for a week, then have the tests, although he didn't seem to think it was necessary.

I ate gluten again for a week, then had the tests done. The endoscopy turned up negative for Celiac, but did show some damage and a partially healing ulcer (thus the severe stomach pain). The blood tests returned negative. I told him the Prilosec was not making a difference, and he upgraded it to Nexium (newer version). I took 3 doses of the Nexium, decided it was making me feel WORSE, not better, and quit it.

When I mentioned that to the specialist he was at a loss, and ordered a PH test (Open Original Shared Link) this would involve a tube stuck down my throat for 24 hours so he could monitor the PH balance of my stomach acid over time.

By this time I was starting to feel better, and was personally convinced that gluten was the issue, even though all of the tests he'd performed came back negative. I ended up refusing the PH test, on the grounds that it was pretty invasive, and that I was already feeling better from the gluten-free diet.

I never went back to his office.

I've never been formally diagnosed with any problem.

This all happened about 3 years ago. At the time I was convinced I had cancer or worse, and was probably dying (I do have a family history, and lost a brother to Leukemia when I was in HS). Today, most days I feel normal, although following the diet is a big PITA. When I don't follow it, I have near constant diarrhea, joint pain, heart palpitations, dizziness/nausea, stomach pain, severe tiredness, and probably other symptoms I'm forgetting.

Last year, we noticed my son appeared not to feel well. He just turned 6 a week ago, so he was probably about 4 1/2 at the time. He used to be the happiest kid you've ever seen, but he started becoming irritable and cranky all the time. We also noticed he was having a lot of diarrhea. It took about a year (one of his doctors died suddenly after administering some tests, but before discussing the results with us, and it took us a while to find a replacement), during which we kept feeding him normal (= containing gluten) food so as not to influence the test results, but his endoscopy and blood tests ended up returning the same as mine: there was noticable damage to the esophagus and stomach lining, but no signs of Celiac, and his blood tests came back negative.

We put him on the gluten-free diet anyway. Since then his personality has almost completely reverted to what it used to be - he's again a happy, cheerful boy. He's gained about 10 lbs, and has grown at least an inch. He was so small as to be off the charts before, but now he's at about the 15% area for height/weight by age.

Based on the above experience, my personal advice would be to try the gluten-free diet for a while, and see if it makes you feel better. My personal experience has been that most doctors (in my area anyway) have little understanding of gluten intolerance, and that the blood and endoscopy tests are not accurate enough to catch all the cases.

I know there are a number of people on this board who have similar stories.

I hope this helps, and hope you find a way to feel better.

David

[KatieTattie]

Thank you both for your caring words, I have got a lot of support at home although I am trying to be strong and not let on the amount of pain I am in, I don't want everyone else to feel as bad as I do. My son is wonderful (hard work though) and my husband is also a star! I am going to continue gluten free as I've noticed some major relief in my symptoms. Where do you all think I should go from here? Back to GP? Do you think I have adequate celiac tests due to only having a Polyclonal IgA (which was high)? BTW I have noticed at tea time feeding my son rusks (for US biscuit type food containing gluten) My hand have swelled up and joints become painful also. My fingrtips literally crack and bleed within 1 hour!!! I mentioned this to allergy dr n he said don't wash up as much!! what a fool! I wear gloves when I anyway! x

[pricklypear1971]

Thank you both for your caring words, I have got a lot of support at home although I am trying to be strong and not let on the amount of pain I am in, I don't want everyone else to feel as bad as I do. My son is wonderful (hard work though) and my husband is also a star! I am going to continue gluten free as I've noticed some major relief in my symptoms. Where do you all think I should go from here? Back to GP? Do you think I have adequate celiac tests due to only having a Polyclonal IgA (which was high)? BTW I have noticed at tea time feeding my son rusks (for US biscuit type food containing gluten) My hand have swelled up and joints become painful also. My fingrtips literally crack and bleed within 1 hour!!! I mentioned this to allergy dr n he said don't wash up as much!! what a fool! I wear gloves when I anyway! x

If you are noticing contact reactions from wheat you need to STOP EATING IT AND TOUCHING IT NOW.

You can develop allergies at any time and you never know when the next contact will give you an anaphalactyc reaction.

It could also be something else in the cracker, but if going gluten-free has helped in the past the two reactions are a really good hint.

[navigator]

If it was me, Katie, I'd go gluten free right now. If you have a good relationship with your GP or,rate him/her as an exceptionally good one, then I would call for an appointment tomorrow. If not, can you change to a GP who perhaps a friend or family member has recommended? The first GP I went to about my fatigue over 3 years ago was lovely and when my tests came back with a ferritin level of 4 he put me on iron and gave me sick lines. However he didn't investigate why my ferritin was so low. I went to another GP in same practice in January and was told it was 'just the menopause'. In May I was feeling worse than I did when my ferritin was 4, I went to another GP in same practice who was recommended by my daughter. Within 2 minutes of consultation he told me that he was 90% sure I had coeliac. He then looked at last 20 years of my records and told me that he felt I'd been getting misdiagnosed.

It's great that your husband is so supportive . Just remember that if you're keeping the full details of how you're feeling from him you are also not permitting him to be as supportive as he may like to be. I know that you're doing it with the best of intentions but you may be doing him a diservice. Remember you don't need to be strong and that's something that took me 54 years to learn!! If I'd learned sooner, I may not have had to give up my career and not been 54 until I started to heal!

Keep using this forum, not only for advice but somewhere to vent to people who really get what your going through and are here for you

Isobel x

[beebs]

It sounds like you have so much red tape to go through to get answers. I usually am of the 'hold out for a diagnosis' kind of person, but it really doesn't sound like you are going to get one. Most Drs don;t know the first thing about coeliac. The other thing you could do is go gluten free and get your genes tested, they aren't full proof but Its around 97-98% of Coeliacs have HLADQ2 of DQ8. Honestly - if you are okay with not having a diagnosis - just be done with it, as someone on here says "the proof is in the pudding". If you feel well then there is your answer. Good luck!