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

Find A New Doc/allergist?


slmprofesseur

Recommended Posts

slmprofesseur Apprentice

Hello! I am a 30 yr old African-American female. I have had for years symptoms of gluten intolerance. I didn't know how much I suffered until the birth of my 2nd ds (33 wks preemie). He is allergic to wheat/eggs/nuts and milk. Since we were nursing, I decided to go wheat free also. I should explain that he has pneumonia, really bad rashes, and horrible colic/stools prior to his diagnosis.

During the pregnancy I had horrible heartburn and a varying array of gastrointestinal problems. I must say the worst experience was the "gallstone" issue. I ate raisin bran for breakfast and was lying on the floor in agony for about 3 hrs. I continued to have these problems...until my journey into wheat/gluten free.

I recently went to my family doc for a checkup and mentioned how my asthma, gastrointestinal problems, and eczema has improved. Not to mention my adult acne... Well this doc asks me if it is a mental change!!?!!

I didn't even approach the celiac disease issue. I am not sure what to do now. My family has a long history of thyroid problems, heart disease etc. I have weaned ds but each time I eat gluten I get migraines, heartburn, and asthma attacks, and constipation. Should I look for a new doc?

Is this an uphill battle?

Please help! I would like to know for the sake of my son. He has been in the 10th percentile for growth until his allergy dx and now is in the 60th.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

It sounds like you and your son both have celiac disease. Since you have been gluten-free for a while now, a new doctor might decide you should go back to eating gluten for testing. Because at this point any celiac disease tests would likely come back negative. You have to actively eat gluten for quite a long time again for tests to come up positive.

Really, you know you are gluten intolerant, probably celiac disease. Your doctor doesn't know what he is talking about. All the symptoms you describe are commonly caused by a gluten intolerance/celiac disease.

No doctor can allow/disallow you to eat whatever you want. If you have decided you feel much healthier without eating gluten, nobody can make you eat it.

You can still find out at least if you are gluten intolerant by doing the tests by Open Original Shared Link. Their tests are still accurate up to a year after eliminating gluten from your diet. They can't officially diagnose celiac disease, because they don't do biopsies, though.

gfpaperdoll Rookie

Yep, just get a new doc - if you need one - but I agree with Ursa just test thru Enterolab & do not make yourself & your son sicker with trying to eat enough gluten to damage yourself so some doctor can tell you that the blood test is negative & no need to restrict your diet... nutty doctors.

& sorry the dr was so rude to pull that junk about a mental change.... it is disgusting. My dil told me that if I would just think happy thoughts that I would not be sick - I would recommend that you read the book "Dangerous Grains"

a more involved book & a longer read is "Good Calories Bad Calories" by Gary Taubes

really the healthiest diet is a diet of meat, seafood, nuts, eggs, veggies, fruits - we really have no need for grains.

slmprofesseur Apprentice
Yep, just get a new doc - if you need one - but I agree with Ursa just test thru Enterolab & do not make yourself & your son sicker with trying to eat enough gluten to damage yourself so some doctor can tell you that the blood test is negative & no need to restrict your diet... nutty doctors.

& sorry the dr was so rude to pull that junk about a mental change.... it is disgusting. My dil told me that if I would just think happy thoughts that I would not be sick - I would recommend that you read the book "Dangerous Grains"

a more involved book & a longer read is "Good Calories Bad Calories" by Gary Taubes

really the healthiest diet is a diet of meat, seafood, nuts, eggs, veggies, fruits - we really have no need for grains.

Thanks for all the info. I can't see going back on gluten. We just do a nice diet of veggies/fruits/and meat. DS and myself are allergic to seafood.I haven't felt this great in years. No more inhalers, stomach woes. It's ironic that all of my online research says that celiac disease is not common in African Americans. I could easily name 10 family members that have it but would never go gluten free. They all have problem such as hypothyroidism, high blood pressure, diabetes (type II), lupus, gout...the list goes on and on.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,342
    • Most Online (within 30 mins)
      7,748

    Setb1210
    Newest Member
    Setb1210
    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
      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...