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Gi Symptoms & Behavior
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Hello! I'm brand new to the gluten free world and have been looking for answers. I went and got tested today (6 vials of blood!) from my family doctor and in a few weeks the results will come back, then the allergist, blah blah blah and etc. After reading a couple of posts, I'm glad I'm not alone with my weird mood swings and no longer feel like a hypochondriac! My roommate and friends believe that I am one since I have a headache every day and my stomach hurts after every meal. Nice support system eh? Haha.

So my symptoms, and I by no means have it as bad as some other people, but answers are comforting and help my confused mind.

When I eat a ton of bread I go through these very weird mood swings. I'll be best friends with everyone, feeling good etc, and then within a 5 minute turnaround, I turn into this straight up witch. This usually lasts for a couple of days (and it's mainly aimed at my roommate and the only adjective I can describe is loathing). Bloating happens in there and then the uncontrollable and never ceasing urge to pass wind. It's quite embarrassing. And then I go back to normal, until I have more gluten-rich meals. I'd say this happens at least once every two weeks.

Aside from that emotional rollercoaster, Sidenote, I literally went and got an epi pen when I found out that I'm HIGHLY allergic to peanuts. Like, go down the peanut aisle and my eyes start to water and my stomach starts to...burn? It feels like a feral cat was let loose and is scratching its way out...unsuccessfully. So recently, I've started to notice that I break out in hives and get the feral cat stomach after eating foods. Bananas, grape soda, gardetto's original mix, tortillas, mac and cheese, and more that I cannot think of at this moment. I love Buffalo Wild Wings and usually order the honey bbq crispy chicken wrap, and then suffer the acid reflux consequence a few hours later. Last week I took part in this and it triggered a migraine along with the FC stomach, hives, and a long night of being in serious discomfort.

Like I've mentioned, I am seen as a hypochondriac. It's extremely frustrating to have no one believe me, except for the quirky nurse today who finally found someone (moi) who has the same issues as herself.

Also, randomly, my left leg goes numb from time to time. I can be sitting cross legged, and only my left foot is numb - not my right. I don't have diabetes (was already tested) and just find it peculiar that this happens.

Sorry if this is a long post, like I've mentioned previously, just looking for answers/others who have similar symptoms.

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Hi Carpe...

My symptoms are mostly neurological but I seen your post and wanted to bump it up. Perhaps others with more similar symptoms will see it and respond.

You must have felt great after talking to the nurse and getting validation for your symptoms. :)

Welcome to the forum.

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Hi Carpe

I've only just seen your post. Your symptoms are fairly similar to mine. I wouldn't have said that major mood swings was my number one symptom, but it was definitely part of the mix. I rather find mood swings are worse now if I get glutened, rather than before I went gluten free. My major symptoms were migraine and chronic joint and muscle pain. Reflux, abdominal pain, gas and bloating were all there, and chronic, but never at the level where when I grumbled to a doctor, they always found some other cause (ovarian cysts, consitipation, appendicitis - the latter was a misdiagnosis, the others were problems secondary to gluten intolerance).

After suffering these chronic problems my whole adult life, things started to escalate about 3 years ago. The stomach issues got worse, the migraines got worse, and I suffered more frequent episodes of major migraine with vomiting and D, plus huge back and hip pain. Whilst I had always suffered from chronic fatigue, I managed it. This now got worse, and I started to feel really ill.

When it started to get worse, I had a frozen shoulder which took about a year of steriod injections, anti-inflammatories and physiotherapy to recover. Then after another year, the other shoulder went. This time it did not respond to treatment, and that led by a circuitous route to my "diagnosis" which is presumed rather than confirmed because I am sero-negative to the antibodies and my doc asked me to trial a gluten free diet rather than send me for biopsy....During this time I would wake up and my arms would be numb. My shoulders are now recovered, and the numbness did go too, but I am still a bit creaky and these problems do flare up again quickly if i get glutened.

A few months before I went gluten free I developed chronic sinus pain (after having had a drippy nose for a couple of years). Then I suddenly started getting a photosensitive rash, then a burning rash on my face, then hives. The hives continued for a little while after going gluten free, and I noticed a reaction to either tomatoes or, more likely, nuts. This reaction to these foods did not last, and I no longer get hives or photosensitive rashes. The burning face comes and goes, and seems to vary with trace gluten exposure. The sinus pain and drippy nose has lessened but is still there after 6 months gluten-free. I have found that anti-histamines help with this. It is possible, even common, for celiac to go hand in hand with allergies. Sometimes the allergies will settle down once your system calms down once it has been on the gluten free diet for a while. IrishHeart has posted elequently on this issue on a number of occasions.

Whilst I wouldn't wish celiac on anyone, I do hope that you find the triggers for your symptoms and can successfully eliminate them.

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I definitely had a lot of neurological symptoms before my diagnosis and they seemed to have gotten worse after going gluten free and accidentally being exposed. I had tingling in my hands and would get terrible cases of sciatica and would even faint - the doctors diagnosed me with syncope. All these random symptoms didnt make sense until I was diagnosed with Celiac. Now, when I get exposed to gluten, I become a raging b**** and my family just knows to clear out of the way. My fiance, bless his heart, has been very good about it and just understands that its going to happen - he runs, hides, and starts playing video games with his headset on.

No, you're not a hypochondriac and I think its pretty clear that you have issues with gluten which would definitely explain everything you're describing. Do your symptoms subside when you're not eating gluten? I think you have your answer right here! Welcome to the forum!!! :)

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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