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Find A New Doc/allergist?

slmprofesseur

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slmprofesseur Apprentice
slmprofesseur
Posted

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.

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Ursa Major Collaborator
Ursa Major
Posted

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
gfpaperdoll
Posted

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
slmprofesseur
Posted
  • Author
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.

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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
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      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

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