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Gi Symptoms & Behavior


Carpe227

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Carpe227 Newbie

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.

  • 4 weeks later...

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Kamma Explorer

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.

UKGail Rookie

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.

  • 4 months later...
LauraB0927 Apprentice

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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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