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Starting To Wonder If Gluten Is Even My Problem

answerseeker

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answerseeker Enthusiast
answerseeker
Posted

To recap my biopsy and blood tests were negative but because I was hospitalized due to asthma and on a lot of prednisone prior to my endoscopy my GI doctor said its possible I can still have celiac and the prednisone interfered with the results.

Anyway as most of you know I've been gluten free since July 2nd. I felt great my first month but now I'm having a whole new set of symptoms.

For the last week my joints hurt to the point I can't sleep at night. My fingers are tingly and the veins in my arms are like popping out. Don't know how to describe it you can feel them and they hurt to the touch.

What the heck could be causing this?

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1desperateladysaved Proficient
1desperateladysaved
Posted

A bump or twist in your gluten intolerance healing?  Have you been checked for vitamin deficiencies?  I have had many twists and bumps.  I have doubted I have celiac.  However, my caregivers believe I do, and have pointed to my improvements as proof.  The improvements haven't always been study and I have also changed or added to my treatment several times.  keep walking on the road, find out what you can to keep yourself motivated.

 

Did you say how long you have had symptoms of gluten intolerance?

 

Get Well,

 

D

seraphim Contributor
seraphim
Posted

Hang in there. There is definitely a lot of crazy stuff  that can pop up after going gluten free. You could always check into casein, nightshades, amines, salicylates...any number of things that pop up and become unmasked once gluten is taken out of the equation. And, it could be possible it's not gluten I guess but I wouldn't risk re-adding it at this point. Experiment a bit?

kareng Grand Master
kareng
Posted

Just a thought - maybe it has nothing to do with gluten?  Maybe you should see a doctor?

 

I know this is a radical idea for a Celiac website but - Not everything is about gluten or even a food intolerance.

dilettantesteph Collaborator
dilettantesteph
Posted

I agree that seeing a doctor sounds like a good idea.  Unfortunately you need to see a GOOD doctor.  Many of us have had problems with bad ones.  Good luck with that.  I have had similar questions many times.  There was such a huge change when I first went gluten free that I had enough evidence to continue on with the extreme elimination of gluten contamination that I had to undertake to completely eliminate symptoms for myself and my son.  It defied credibility lots of times, but it is what works.  We also have several doctors working with us and some of them actually know their stuff, and lots of test results, which also helps.

 

I hope that you get things figured out.

nvsmom Community Regular
nvsmom
Posted

(hugs)

From my third to sixth month gluten-free, I felt my worst. I would get periodic (autoimmune) arthralic attacks with a lot of fatigue and hair loss in the past to the point that I was looking into lupus. I saw a rheumy at that time and she was positive that it was all caused by lingering celiac/gluten intolerance issues.  I am hoping she is right because I have been almost pain-free for months now.

 

It may need more time. Those symptoms can really hang on a loooooong time. Unfortunately.  :( In the mean time, you might as well look into other causes; as we all know, it's not always a gluten intolerance thing.

 

Best wishes.

Gemini Experienced
Gemini
Posted

Just a thought - maybe it has nothing to do with gluten?  Maybe you should see a doctor?

 

I know this is a radical idea for a Celiac website but - Not everything is about gluten or even a food intolerance.

Yup, Kareng........pretty radical, I agree.   ;)   There may be another AI problem brewing and it may have zero to do with gluten.  Rheumatoid arthritis and thyroid disease will give a person painful joints.  These 2 diseases are common with Celiac.  Even without these 2 issues, you need to be gluten-free for a quite a while before symptoms subside.  I did not get rid of my last symptom, bone pain, until 3 years post gluten-free and I was super strict with my diet as I am very, very sensitive.

 

You can see a doctor and be tested for other AI issues but if you are on prednisone, your testing will most likely be negative.

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Happyw5 Explorer
Happyw5
Posted

I agree about going to a doctor.  Are you on any medications?  Some medicines have side effects and they can start at any time.  I have questioned my gluten issues-but every time I tried to reintroduce it, it ended badly!  For a long time I thought every pain and symptom was because of what I ate..  I was put on an anxiety medication at the time, becuase I was at the dr all the time with "problems."  I took the medicine for about a year and I have to say it really helped.  I don't doubt that all the problems I was having weren't real, I think I was just so obsessed with paying attention to my body that I didn't know what was normal anymore.  I was taken off the medicine about 2 years ago and I am doing great.  I am not on any medicines right now, I am gluten free, and working on healthier eating and less chemicals in general...  Good Luck, just don't refuse to think it could be something else

mommy2krj Explorer
mommy2krj
Posted

I was going to also say that maybe it isn't the gluten that is causing this issue.

A lot of medications will say in their little fine print warnings that you can have reactions to them up to 12 months later. Maybe this is a reaction to the prednisone? Or it could be a million other things besides Celiac. The joys of this disease, figuring out which reactions are related to what!

 

Hope you can get it all figured out. Stay strong and just keep wading through until you get to the other side, where you feel better and know what all your reactions are.

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

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    • trents
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      @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
      My only proof

      By knitty kitty · Posted

      @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!
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