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Questions Re: Symptoms


nama shivaya

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nama shivaya Explorer

Are these symptoms typical of either celiac disease or other food-related sensitivities?

Migraine (accompanied with upper sinus drainage)

Anxiety

Lump in throat

Gas (burping and "wind". Wind does not expel easily)

Stomach pains (small, sharp here and there)

Intestinal bloated feeling

Weakness in legs and arms (some tingling and muscle twitches)

Also, I can eat a sandwich, a bowl of oatmeal or a pancake and be full all day!!! When I eat only meat and veggies, I seem to digest them quickly and feel OK.

For the past week I've been cutting out all gluten-containing foods but my tummy/guts still feel tender and bloated. I'm keeping a journal of everything I eat in relation to physical and emotional symptoms, but am not coming up with any super-clear connections (besides corn/wheat/oats/rice flour). Also, I'm on Bactrim antibiotic for some folliculitis and when I take that pill I get a lump in my throat and immediate sinus drainage.

I have to say that my doc experience has been really frustrating! Neuro is pursuing an MS dx, PCP is just too dang busy to focus on all my problems. I've seen an ENT who wants to do allergy skin prick testing. Testing for allergies seems a good way to go, but skin prick for a few things? Perhaps my money would best be spent doing the Lame Advertisement for 150 different things.

Anway, this seems so overwhelming that I'm wondering if I could get some input from those of you who have been here, done this.

Thanks!!!!!


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CarlaB Enthusiast

Celiac can be causing the symptoms you describe. It's really hard to get 100% of the gluten out of your diet right away, so that may be why you aren't feeling better ... plus it takes time to feel better.

If you end up with an MS diagnosis, be sure you test for Lyme. The symptoms are just about the same and the steroids they give you for MS is REALLY bad for Lyme .... makes it MUCH worse. They really should make it part of MS testing to rule out Lyme, but the medical community is trying to deny that Lyme even exists!

I should add, that celiac also has similar symptoms. My Lyme doc rules out celiac before he diagnoses Lyme. I really hope that it ends up being a gluten problem for you and not Lyme or MS.

Keep researching ... if it wasn't for my researching I never would have found either my Lyme or my gluten intolerance! My docs never thought of either possibility!

nama shivaya Explorer

Thanks, Carla. I had a ton of blood drawn this week (at my insistance). My PCP added Lyme to the list as well as B12, Folate, IgA EMA, serum IgA and Anylase/Cipase (sp?). I've been only really gluten-free for maybe a week, so am thinking it shouldn't affect the tests.

You seem to be a very vocal member of this forum, and I want to personally thank you for taking the time to help those of us who are searching for answers!

Best,

Nama :)

CarlaB Enthusiast

Nama, you're welcome. I still feel pretty bad, so I spend some time here answering questions from my laptop. You can tell when I'm having a good day because you won't see me much!

I'm sure you'll get more answers to this question during the week. The weekend is slow.

Hopefully, you will get an answer from this round of tests!

Rachel--24 Collaborator
Thanks, Carla. I had a ton of blood drawn this week (at my insistance). My PCP added Lyme to the list as well as B12, Folate, IgA EMA, serum IgA and Anylase/Cipase (sp?). I've been only really gluten-free for maybe a week, so am thinking it shouldn't affect the tests.

Nama...please be aware that there is no test available to rule out Lyme at this time. The bloodtests dont always detect Lyme for many different reasons. IgeniX lab in CA is the lab with the most sensitive test...its the best available.

Other labs which Dr.'s use have less than 60% sensitivity and miss more cases of Lyme then they pick up. A Dr. who is knowledgeable about Lyme would know this for sure.

If the Dr. who runs your test tells you you dont have Lyme based on negative bloodwork.....especially coming from a lab which is not Igenix....you should not rule it out. When there is a possibility of MS being diagnosed....Lyme should be looked at in every way before making any decisions about treatment for MS.

The two diseases are impossible to tell apart and the wrong diagnosis has hurt many people who've actually had Lyme. Steroids weaken the immune system and drive the infection deeper into the tissue....making a bad situation a whole lot worse.

I'm glad you are being persistent....you are your own best advocate. :)

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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. 
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      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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