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Looking For Insight.


elizjk

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elizjk Newbie

Hi, I am new. I have had food issues for as long as I can remember and things have worsened in the past few months. I recently saw my PCP and had her check a celiac panel. The results were negative (but she didn't check a serum IgA). My TSH was also within normal limits. CBC was great. I have scheduled an appointment with my allergist for November... but I wanted to see if you knowledgable folks have any insight.

As a kid I was a picky eater and had trouble gaining weight. My mom would feed me frappes (milkshakes for you non north easterners) to get extra calories in me. I would have frequent stomach aches. Things worsened as a teen (frequent diarrhea) and I saw a GI doc who basically recommended more fiber. It helped a little but I still had symptoms. In my early 20s I finally saw an allergist after my then PCP found my shellfish allergy on a blood test in addition to my chronic eczema, asthma and seasonal allergies. I had a scratch test and was basically allergic to everything except dogs. I have eliminated fish, shellfish, birch related tree fruits, nuts, peanuts, and green beans from my diet. About a year ago I stopped drinking beer because it made me so bloated and usually made me run to the bathroom. I am pretty on top of limiting cross contamination, but I STILL have symptoms.

So what prompted me to see my doc was that in the past few months I have been chronically bloated to the point people at work kept asking me if I was pregnant and I stopped buying fitted shirts (luckily the trend is skinny jeans and peasant tops). I have also had an increase in the frequency of the big D. After I had the celiac panel drawn I opted to try cutting down on the amount of gluten containing foods and I have noticed a tremendous decrease in the bloating. I do still have digestive issues and started a food log to see if I can find the trigger. The other night I had regular (delicious) pizza and it resulted in stomach pain, immediate diarrhea, and diarrhea for three days after. (This might be TMI but it's almost undigested food/puke, sorry gross I know)

Also of note I frequently break out in rashes and saw a dermatologist but they are so inconsistent I am lucky if they are times right for my appointment. I feel like they just called it a dermatitis even though I haven't changed anything in my environment. Zyrtec has helped a bit but they still come and go. My skin is also the driest it has ever been despite trying to drink as much water as possible and moisturizing. Also despite zyrtec my ear canals itch like CRAZY.

I guess I am just kind of frustrated with the elimination of so many things in my diet and not definitively knowing. And also the digestive aspect of it. Any insight is appreciated as you seem like a solid community with similar experiences.


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kareng Grand Master

Do you have a copy of your tests?  You might not have needed the Total serum IGA if they did an IGA and an IGG version.  Some do it that way.

elizjk Newbie

They did the TTG Ab IgA, Gliadin, and Gliadin IgA.

No IgG.

elizjk Newbie

Also I should probably note I have been treated for depression (which I think was related to working night shifts and has more or less resolved), ADD, back pain since I was in my 20s, acne which is worse now than ever... And probably other stuff I'm forgetting.

Did you ever find symptoms coming and going? Should I ask for more testing/serum IgA... or to see someone in GI?

GF Lover Rising Star

The proper testing procedures for Celiac can be found here.

 

Open Original Shared Link

 

A rash can be DH, look at the pictures on the Dermatitis Herpetiformis thread.  When you get the rash again, take pictures to document.  Getting diagnosed can be really difficult.  If everything continues to be negative you may still be Intolerant.  Since you already have many food allergies, you may have developed more.  I hope your appointment with your Allergist yields some results for you. 

 

Good luck.

 

Colleen

  • 6 months later...
elizjk Newbie

In case anyone is curious, and perhaps for my own need to think outwardly in a forum that understands... my allergist was not helpful. He did recommend a vit d level which proved I was deficient. I ended up seeing GI who did an IgA level which was normal, but was otherwise not that helpful. I started a strict gluten-free diet in January and my GI symptoms have resolved (minus some difficulty while traveling which was not fun).

My fingernails are no longer shredding and my hair stopped falling out. My acne has improved and my overall rashy outbreaks have calmed.

I'm now considering going back on gluten and going back to GI to see if maybe they can scope me... But I feel so much better the idea seems almost crazy.

Also of note, both my brother and dad have extensive issues with inflammation of different parts of the GI tract. My dad's going to request a panel be done (he's also had iron def anemia, gerd, hypothyroid). I feel like there are some dots that need connecting and it's pretty frustrating.

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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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