Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Lo And Behold

tiredofdoctors

Recommended Posts

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Ash went back to the doctor today at school. They now have her going to the Chief GI and the Chief Hepatologist.

They did TONS of bloodwork today (she said 10 tubes drawn), but "three of the tests were specific for Celiac Disease" --

They have her scheduled for an endoscopy, and probable colonoscopy.

Their other two (scarier) but less likely diagnoses: a rare form of colon cancer or liver cancer.

The doctor did say, however, that with my disease, the fact that they DIDN'T do an HLA DQ1 test (said they couldn't??????), but that I have gluten intolerance, everything points to Celiac Disease. My daughter is furious. She said that my pasta "is disgusting". It's not like REAL pasta. (She grew up on home-made noodles, spaghetti noodles, etc.) Hoping VERY MUCH that it's Celiac and no more than that.

Thought that it was kind of ironic that she had a really hard time believing that my difficulties were not in my head -- and were due to gluten -- and now, the tables have turned . . . . . . .

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

Celiac.com Sponsor (A8-M):


mouse Enthusiast
mouse
Posted

Ashley still has the TB problem, doesn't she?

If she has celiac disease, I would love to be a mouse in her home. The rantings are going to be worse then they are now. I would be sorry that she has it, but hope that if she does, some good can come out of the diagnosis. Like treating her Mother's illness seriously and with caring.

CarlaB Enthusiast
CarlaB
Posted

For so many people a celiac diagnosis would be so scary ... but since it's familiar to us now, you can honestly say, "Thank goodness it's ONLY celiac!" It definately sounds like the best choice of the three ... not that there's a choice involved. Keep us posted.

happygirl Collaborator
happygirl
Posted

Keep us updated, Lynne. I'd definitely be interested to know how this all plays out. xoxo

Canadian Karen Community Regular
Canadian Karen
Posted

Oh my...... The irony of it would be just too much to fathom!

What goes around, comes around..... Above all, God does seem to work in mysterious ways, doesn't he?.....

Luv ya always,

Karen

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

Isn't that the truth????? She has her endoscopy on Wednesday at 11:00. I'm gonna be there, because I want to hear it STRAIGHT FROM THE SURGEON if those villi are flattened!!!!!

It would make ABSOLUTE sense, though, as to why she is having so much difficulty. She is pale, she is RAIL thin, she swears she's eating, not purging, and her husband backs this up. When she is at my mom's she is always "grazing" . . . of course, on all things gluten-filled!

Should be interesting to see how this plays out. I SERIOIUSLY hope it's "only Celiac". Funny -- two years ago, I would have FREAKED OUT if I found out my daughter had Celiac!

AndreaB Contributor
AndreaB
Posted

As Carla said, we've come far when we hope it's just Celiac.

At least that is totally treatable with the diet change.

Please keep us posted.....I know you will. :)

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,082
    • Most Online (within 30 mins)
      7,748
    Jane5858
    Newest Member
    Jane5858
    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

    • Wheatwacked
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By Wheatwacked · Posted

      With all the bloodwork, have they checked your vitamin D?  What is it?  Celiac Disease causes malabsorption, so vitamin deficiencies are common.  Doctors rarely mention this. B1 Gastrointestinal beriberi, a severe thiamine deficiency, is characterized by symptoms including anorexia (loss of appetite), abdominal discomfort and pain, nausea, and vomiting. Other potential symptoms like abdominal fullness, indigestion, and constipation can also occur. These gastrointestinal issues may resist standard treatments, signaling a need to consider thiamine deficiency.  It is commonly believed that thiamine deficiency is not an issue in the western cultures, so rarely address by doctors. Doses of thiamine above 100 mg several times a day will quickly show improvement.  Borderline deficiency will come and go depending on what your eat.  Carbs use it up faster, so for example if you eat a lot of carbs today, tomorrow you may have symptoms.  Thiamine (Benfothiamine is a synthetic fat soluable thiamine) is water soluable, we only store maybe a weeks worth, and there is no upper limit on how much you consume.  Excess is stored or peed away.   For them it isn't a oroblem.  LOL.  They just say some people are like that and see the next patient.  
    • sillyac58
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By sillyac58 · Posted

      I used the cream for 4 days as prescribed 3 years ago. While I cannot be sure it triggered these problems, the timing is very suspicious. Yes, the oats are gluten free, and while I knew some celiacs have a problem with oats, I only just thought to eliminate them.  I just read about corn on this website, which I do eat plenty of. I do eat dairy, and would be so terrible sad to give it up, but..... Thank you for the diary suggestions. I'll start one today. Thanks for responding!
    • trents
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By trents · Posted

      Welcome to the forum, @sillyac58! Are you still using this topical medication for this precancerous spot on your lip? If not, are you saying you used it for a limited time and believe it triggered additional ongoing immune system reactions with unpleasant symptoms? I'm not clear on this. Are the oats you use certified gluten free? You may know this already, but even if they are certified gluten free, the oat protein avenin is similar enough to gluten to cause reactions in some celiacs. The development of other food intolerances is also common in the celiac community. Common offenders in addition to oats are dairy, eggs corn and soy. Dairy and oats are the most common, however. You might do well to keep a food diary and check for patterns.
    • sillyac58
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By sillyac58 · Posted

      I was diagnosed about 10 yrs ago with Celiac by presenting with dermatitis herpetiformis rash. I had no stomach or intestinal discomfort, but of course showed intestinal damage. The dermatitis herpetiformis eventually went away and I've been religiously gluten free ever since. About 3 years ago I was given a topical drug by a dermatologist for pre cancerous spot on my lip. The drug is called Imiquimod/Aldara, and works by stimulating your immune system. ? The package insert and many releable online sources warn to use caution using this drug if one has an auto immune disease, I hace since found out. One of the side effects is flu like symtoms, which I had at the 10 day mark as warned. But these symptoms have been recurring regularly ever since. Low grade nausea (no vomiting), extreme fatique (sleeping in daytime) and often a migraine headache on day one or two. The bouts last around 5 days or more, usually the nausea being the persistent symptom. My dermatologist, and another I went to for second opinion say this isn't a problem. I have been ill about a third of my life ever since. I have had extensive bloodwork, been to numerous specialists, but cannot figure out what is making me sick. I have become neurotic about gluten at home, using separate cutting boards, pans, sponges, dish towels, etc. I rarely eat out, and usually only because I am traveling. I have begun taking my own food to peoples homes for dinners etc. The only thing I haven't done, until now, is to eliminated oats, which I eat fairly regularly, and are known to sometimes be a trigger. And I have to say, in my defense, that it took me a very long time to suspect gluten because my only original symtom was rash/dermatitis herpetiformis. So I didn't associate the nausea/headache/fatique with gluten for a long time. Nor did any one of the many doctors I saw suspect it. I finally had a couple of dermatitis herpetiformis spots (and severe migraine) when traveling and probably eating cross contaminated food. I've never been on one of these sights but I am desperate. I'm praying it's as simple as eliminating oats. But I am angry that I was given this drug that I truly believe set this off to begin with. Anyone?
    • Wheatwacked
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Wheatwacked · Posted

      Just switching to gluten free diet will answer your question without involving anyone else.  Your sister was diagnosed, that puts you at 40% risk of having it also as a first degree relative.  If you improve on a trial gluten free diet, you either have Celiac Disease (autoimmune) or Non Celiac Gluten Sensitivity (not autoimmune).  In any case it is important to address nutritional deficiencies like vitamin D.  Gluten free processed foods are not required to fortify.  The reason gluten foods are fortified is our western diet is deficient in them to the point where the government had to step in and require fortification.   Once you start GFD you'll realize it was the gluten you were afraid of all along, but nobody told you.
×
×
  • Create New...