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

Difficulty Getting Dx


dreamboat

Recommended Posts

dreamboat Newbie

This is all new, so bear with me please.

I got my cbc back,all within normal range.IgA was 158 though.

I am curious if anyone else has had these symptoms.

No allergy showing for food,mild intolerance to milk(never had this before)

1 month ago I had a sudden hive outbreak and the Dr.'s don't know why.

Dx ibs 10 yrs ago, and gerd 5 yrs ago

I have 2 beautiful teenagers, but also had 2 recent miscarriages( also no clue why)

Very itchy skin

and blood pressure fluctuates GREATLY from day to day

and my extremities go cold off and on, but never at the same time.

I also have swollen lymph glands ( all of them)

and headaches

Now the Dr.'s are running tests for Lupus and other things.Has anyone else been in this black hole?


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

The hives and itchy skin could be chronic urticaria (CU). Unfortunately, there are lots of things that could cause the symptoms you're having... infections, autoimmune disorders, mast cell disorders... it takes time to narrow down the possibilities. I know what that black hole is like :( For more than a year I've been trying to figure out why I have chronic abdominal pain with fatigue, weight loss, and periodic rashes. It helped to eliminate gluten and corn... but that was only part of the problem. In February I started having anaphylactic reactions for no apparent reason (they happen early in the morning when I haven't been eating, exercising, taking any medications, getting stings/bites, or having medical procedures)... it looks like I either have ideopathic anaphylaxis or systemic mastocytosis (IA is more common). I have ruled out SO many things! I've seen three gynecologists, an ENT, an endocrinologist, an allergist, a rheumatologist, and several GPs... my next appointment is with a gastroenterologist.

I'm sorry you're having such a hard time. It takes a lot of effort to keep looking for answers.

ang1e0251 Contributor

While he's doing all this testing, ask for a celiac panel to be run. Can't hurt.

dreamboat Newbie

Thank you , very much. I believe the doc is doing celiac panel as well as everything else.

I have found out , however, that several of my family member have similar(& worse) gut, nerve and skin problems, which have yet to be resolved, and of course all being treated differently by different docs.

One other thing, my grandfather was 100% irish.

Nothing to do now but sit and wait.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,660
    • Most Online (within 30 mins)
      7,748

    MandyK
    Newest Member
    MandyK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
    • Julie 911
      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
×
×
  • 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.