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Not Yet Tested Or Diagnosed


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#1 OasisFlyer

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Posted 09 March 2011 - 11:36 AM

I'm very new here, but have been reading around and find that I can relate to so many stories! This is going to be long, so I apologize now for that! I am female, 29 years old, not overweight, not diagnosed and have not been tested, but have an appointment scheduled with my Allergist/Immunologist tomorrow, where I will suggest that I get tested for gluten allergy/intolerance/etc. The reason I suspect this may be my answer is that I've been through ten years of primary care docs, specialists, tests, scans, surgeries and frustration, with no good diagnosis, and my symptoms seem to line up with so many things people have said here. My main complaint is severe fatigue, with headaches/migraines being the second worst part, among many other things which I will get into later if anybody wants to read that much.

They have tried to explain this all away by diagnosing sinusitis/rhinitis (allergy tested negative with the skin tests, yet I can't tolerate being off Claritin, or I itch head to toe) and correcting a deviated septum (twice), when that didn't work we moved on to sleep apnea (which runs in my family) and I do have it and it's treated with 100% compliance using an oral appliance (I could not tolerate C-PAP), and when that didn't solve the fatigue my doctors were and are totally stumped. I also have been diagnosed with migraines, PMDD, bioplar disorder and having cold sores with a negative test for HSV 1 & 2. I also recently became aware that I have acid reflux, which I am thinking about going to a GI doc for (tho my PCP suggested OTC Zantac which I have been taking), and wondering if it would help going to one for this gluten problem as well???

Anyway, my other symptoms that have been going on for a long time include insomnia, anxiety, depression, general malaise, daily headaches, bloating, burping, the big "C", mouth ulcers (not like the HSV kind, with a recent frequency), heart palpitations, psoriasis, very cold feet and toes, I'm always hungry (and try to eat "right" which meant including tons of whole grains, but never really feeling better), had extremely low ferritin level 3 years ago with no explanation, and I am ALWAYS getting "sick" (what feels like getting a cold or virus every 2 weeks, which is no way to live, and frequent bacterial infections as well as subsequent yeast infections).

Recently a whole new spectrum of things have started, as well as a lot more stress has been added to my life. A few weeks ago I started developing extreme dry mouth, which encouraged me to drink more, in turn making me run to the bathroom all the time, which also included urgency. I feel foggy all the time and like I have low concentration and feel a bit spacey at times. The anxiety and depression have gotten markedly worse, as well as new joint pain and swelling which my doctor had no explanation for. I feel so much worse in the morning when I wake up, sometimes with anxiety and nausea (which I can't possibly explain whether the nausea is caused by the anxiety or something else, and I'm not pregnant). One thing that I have noticed is a heightened and more sensitive sense of smell, which with my sinus problems, usually I can't smell anything. I have been having mood swings, visual disturbances, chest burning and tightness, heartburn, random sweats and chills, sporadic abdominal pain, been weak and shaky (which seemed like hypoglycemia to me, but my sugars are fine, no diabetes), and a lot of flu-like symptoms without the nasal problems it would come with (sneezing, dripping, extreme congestion).

I have been tested for diabetes and thyroid issues among many other things, and always the tests come back within the normal ranges. The reason I suspect a gluten allergy is because during that diabetes "scare" with the frequent urination and dry mouth, I cut carbs back to see if it would affect anything. And sure enough, it did. When I cut carbs (consequently cutting out all my favorites, like whole wheat pasta, bread and cereal), my urinary symptoms went away and I lost 5 lbs within a week. After getting my non-diabetic results, I slowly added carbs back in, but not those with gluten, only rice and potatoes, etc. Still I felt alright, not great, but alright. Then last week I got a "cold" and got angry and felt bad again and gave up the gluten free eating and yesterday I had 3 slices of bread and some pasta. I woke up this morning feeling like I had the flu ten times over and I was hit by a mack truck. My headache has been unbearable. So, I called and made an appointment with my allergist and I'm crossing my fingers that he hears me out on this.

Does it sound like I'm going in the right direction here? No matter what my blood test results say, I'm going back to gluten free ASAP, because I know I found some relief when I cut carbs and that it can't be a coincidence!
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#2 mary77

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Posted 09 March 2011 - 12:22 PM

Oh I hope you get some answers. I hope we both do. I never really knew how badly I was fatigued until I spent a few days gluten free. The first day back on, I ate a sandwich and just like you said, a few hours later I felt like i had been hit by a truck.
Here's hoping your doc is feeling cooperative tomorrow!
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#3 Dixiebell

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Posted 09 March 2011 - 12:54 PM

Hi OasisFlyer.
These are the celiac disease tests you need to ask for:

Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG
Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG
You also need to have your vitamin and mineral levels checked to see if you are deficient in any.
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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#4 OasisFlyer

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Posted 10 March 2011 - 05:48 AM

Hi OasisFlyer.
These are the celiac disease tests you need to ask for:

Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG
Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG
You also need to have your vitamin and mineral levels checked to see if you are deficient in any.


Thank you for this info, I have it all written down, but I'm wondering how this doc is going to react to me coming in there saying, "This is what I think I have and these are the tests I want." Oh well, if I don't get satisfaction there, I'll move on! He is an allergist, but I was planning on making an appointment with a GI doc anyway (for reflux) so I'll try there too.
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#5 hnybny91

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Posted 10 March 2011 - 08:30 AM

You sound excatly like I did before going gluten free. Within one week I knew I would never eat gluten again. My weak bladder cleared up in the first week too and that was something I never even thought was realted to my mystery disease.
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#6 OasisFlyer

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Posted 10 March 2011 - 08:57 AM

You sound excatly like I did before going gluten free. Within one week I knew I would never eat gluten again. My weak bladder cleared up in the first week too and that was something I never even thought was realted to my mystery disease.


That's very encouraging! I'm having major anxiety about going and presenting this endless list of symptoms to my doctor. The only thing that's helping remotely is knowing my fiance will be there with me, and can back me up when I say I cut "carbs" and felt somewhat better, then reintroduced "carbs" and got worse again, then cut gluten and felt better, then reintroduced and felt worse than I have all along. Well, of course everyone here at the forum has been amazing and that helps too. I'm 3 hours away from my appointment and am trying to stay away from the Xanax!

No matter what he says, or what the bloodwork shows, I'm going to a GI doc, and I'm NOT eating gluten ever again!
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#7 missj

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Posted 10 March 2011 - 08:03 PM

Good luck. I am having just about the same issue. A few years ago I cut my carbs to lose weight and started to feel like a miliion bucks. I added them back in and ever since then, nothing has ever been normal again. If I can't get answers from my GI in 2 weeks I want to try my allergist. I have seen lots of people on here talk about being diagnosed by their allergist.
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#8 OasisFlyer

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Posted 11 March 2011 - 04:54 AM

Well, my allergist is doing the "Celiac Panel" blood test... tried to look up what it entails, but I had already got the blood drawn and turned the paper in, so I don't know exactly what it was. It's a start, anyhow. I'm preparing myself for the almost certain negative it will show. Going to call the GI doc and make my first appointment there regardless. The best/worst part was when he (finally) gave me the diagnosis of Chronic Fatigue Syndrome, told me to cut all caffeine, (I drink one cup at 5 am, on days when I drag myself to work and go to sleep at 9:30 pm, so it's not keeping me up) and my doc says he cut out caffeine in January and his headaches have gone down significantly. I do get migraines occasionally, but worse than that is a chronic daily, never ending headache that just will not go away. He says he is now a lot more sluggish during the day but has less headaches and sleeps better. Coffee's not good for my acid reflux anyway, so I'll just give it a shot. Not sure how the fiancee is going to like it :P And the doc also said to make sure I get exercise and for my fiance to make me do it.... but he doesn't exercise either! Me and exercise do not get along well. I have never found it enjoyable, never have the energy (or lack of headache) to do it, and I swear I can get into my Wii Fit for 3 days a week, for 2 weeks, then I get the "flu" again and I lose it. This has happened countless times... this "flu" I get every 2 weeks ruins my life :angry:

I'm hoping I was eating enough gluten the past few weeks for the test to even have a chance to show anything. I'm quite discouraged by the CFS diagnosis and don't see these head/face aches going away anytime soon :(
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#9 OasisFlyer

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Posted 27 March 2011 - 03:14 PM

Just wanted to say that I went to a GI doc, who says that if I feel sick while eating gluten, and better off it, then I am most likely gluten intolerant. Like I needed him to tell me that :P He wants me to get an endoscopy to check for reflux damage and he's going to do a biopsy, but I haven't scheduled it yet. He advised me to go back on gluten for a week before the test so that he can see if anything is going on, and I feel like I can't schedule in a week of being sick into my life! I'm terrified to do both (the gluten and the test) so wish me luck!
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#10 mushroom

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Posted 27 March 2011 - 04:05 PM

So I guess your blood test results were negative? If you hadn't been eating gluten for very long, that is probably not a big surprise. And I do not believe that one week of eating gluten will influence your biopsy results that much either :o At lest your doc is willing to entertain the diagnosis of gluten intolerance which basically means you didn't get a passing grade on the test. But if you had been studying algebra and they tested you for geometry, failing would make sense :blink: Some of us react to gluten algebraically and some try to deal with it geometrically, so if they give you the wrong test you will probably fail. Don't worry too much about the biopsy findings as they will almost certainly be negative (in fact, if I were you I would skip the one week gluten (just MHO) and just see if he found anything else on the endoscopy :P ). But do take the gluten intolerance diagnosis to heart and strictly follow the diet. Your health depends on it.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#11 jrose1982

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Posted 27 March 2011 - 05:15 PM

Im not diagnosed or tested either but you stated alot of my "symptoms". Especially the spacyness/foggyness, headaches, stomach disturbances, fatigue, anxiety and "diabetic" symptoms. My mother is type 1 diabetic and I felt bad enough she gave me a monitor and testing strips. Needless to say my blood sugar is excellent. The info on this site is convincing me more and more that something is wrong. I also have alopecia areata that is treated with injections of Kenalog whenever I can afford them. Keep us updated!! And good luck!!!
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~Jennifer~


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