Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Looking For Insight.


elizjk

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,016
    • Most Online (within 30 mins)
      7,748

    HONEYSUCKLE
    Newest Member
    HONEYSUCKLE
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.