I had Celiac based on my symptoms.

Question

I am so confused right now and I didn’t know who else to turn to. My doctor was convinced that I had Celiac based on my symptoms. I started researching it, and for the first time in my life, I felt like there was an answer for all my weird unexplainable symptoms. My blood test was negative (I had been GF for 6 months prior), but he was still convinced and did a scope to diagnose. I was on gluten heavy starting November 27th and had my scope December 27. GI called me earlier today. Biopsies were negative for Celiac.

Here’s the tricky part. He stated that he now believes my issues are motility related and suggested a drug called Domperidone (which is not approved and explicitly illegal to distribute in the US)! I am in shock that my doctor would suggest that I order something online from another country, unregulated, but what makes it worse is that there are serious heart related side effects which would require routine monitoring. In addition, in countries where it is legal there is a limit on duration of around 10 days from what I’ve read, but my GI is talking like this will be a long term solution.

I’m just so confused and angry and shocked all at once.

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Elizabeth 3 years 47 Answers 756 views 0

Answers ( 47 )

  1. Sweetie first take a deep breath now I know things can overwhelm. This doctor is not God get your 2nd opinion and go from there do not allow any doctor make you feel uncomfortable whether about taking drugs or treatment. Doctors do get things wrong time to time and I will pray with you that the new doctor works out and has an opening to move you up quicker. I pray everything works out for you and I pray healing in your body. Have a blessed day

  2. It is prescribe for long term in canada (a maximum dosage for safety is established). If you dont have a heart condition it is considered safer for a young woman. Still if you want to make sure you dont have a risk of arythmia with the medication you could do an EKG before medication and while taking the medication.

  3. Make sure the domperidone you buy is GF…

  4. Second opinion, and if eating GF u feel better, then just eat GF… I wouldn’t go back to him.

  5. What are your symptoms? You may have already posted but I didn’t see it. 😉 I have 2 celiacs and 1 non celiac with motility issues so curious of your symptoms

  6. I can so relate to this post. I’ve had a number of physical issues (always kind of hungry, tummy pain, feel a bit nauseated in the AM, other things) along with worsening brain fog, sound sensitivity, constant headache, and constant tiredness. Ruled out sleep apnea, then even though my TTA IgG was a bit elevated, ruled out Celiac (by scope). Side note I’m still GF and feel better for doing so – pretty sure I’m one of those gluten-sensitive folks. Regular Dr’s had nothing much to offer. Had a follow-up with the GI doc, nothing much to offer. Some GI inflammation, slightly elevated WBC count, my Dr’s wouldn’t even test me for other food allergies. “There’s no conclusive tests for that” they say. “You just have IBS and motility issues” they say.

    Fast forward to me seeking out a good ND who is well-versed in genetic issues. I already had my 23andMe genetic file from a test I had run last year. So she reads it – I’m homozygous FUT2, along with genes that predispose me to low cortisol levels, among other things. When Cortisol is low, one tends to run on adrenaline/epiniphrine to get by, which apparently I’ve been doing for years. This also affects the entire GI system – it keeps you basically in constant fight or flight mode. This affects digestion and various other bodily systems mightily. It also wears the adrenal glands out over time.

    The FUT2 means that I’m a non-secretor for my blood type antigen into my digestive tract and mucousal linings in my body. Seems like no big deal, but that leads to a number of other issues because much of the beneficial gut flora in the body rely on that as a primary food source. Along with a poor microbiome, years of antibiotic use for various issues and other toxic exposures meant my gut was not doing its’ job so well. Nutrient absorption is low, plus the gut can become damaged and allow large proteins through that shouldn’t get through, resulting in an auto-immune type response as the body tries to fish those proteins out of various tissues.

    Your story may be completely different than mine, however the turning point for me was seeking out a really good ND and taking a functional/genetic perspective.

    I’m almost 1 month GF, and only 8 days into the beginning treatment protocol for gut health & beginning to balance some of the neurotransmitter issues I have. We won’t even start to work on some until we have labs back in the new year. Already my sound sensitivity is decreased, brain fog fading, ability to speak, read and write is better, my stomach pain is decreased, constant hunger fading, my eczema on my hands is starting to get a little better, less nausea in AM, it’s crazy how much is starting to change. Please seek out a functional medicine or naturopathic Dr. Best of luck to you in your search for better health!

  7. Find a new doctor

  8. If you feel better off of gluten, it can be gluten intolerance. Get a second opinion. If you can afford it, see a whole functional dr.

  9. That is prescribed for woman who need help with breast milk supply in Canada :-/ and we were told 3 months on a gluten diet to test my son and he HAS to eat some every day no skipping days before the test and that’s just the blood work

  10. I took that for increasing breastmilk and had to stop after having very scary thoughts…

  11. 4 weeks may not have been enough time

  12. Its used for gastroparesis. I take it occasionally. I also have celiac. Used for motility disorder. I can’t take the AMERICAN alternative which gives me tarkive dyskinesia.

  13. Domperidone is widely used and much preferred by many GI doctors because its U.S. counterpart is Reglan and it has much more serious side effects. The FDA has had Domperidone on and off the market for years. I’m not only Celiac (14yrs), but I’m an IBCLC (Lactation Consultant) and Domperidone is suggested for moms who have imbalances that cause low milk supply.
    I would say if gf makes you feel better, stick to it. If you have symptoms that Domperidone would help, I would give it a try.

  14. What is a functional medicine practitioner?

  15. Get your doctor to test your stool for parasites. Seriously. I had been dealing with nasty symptoms too. Been dealing with IBS for years. Got really bad. A different doctor filling in for mine suggested testing for parasites. Sure enough, he was right. Parasites can cause all sorts of issues including food sensitivities. https://www.betterhealthguy.com/topics/parasites Anyway, I’m in the midst of taking some meds, but have also cut out gluten. Am feeling SO much better already. Doc hasn’t ruled out late occurring Celiac or a gluten intolerance, but we’re going to see what happens once the parasites are gone. If you haven’t done the stool test yet, it’s worth a try.

  16. Don’t take Domperidone! I had a GI guy give that to me and I started lactating! My kids were in their teens!

  17. 2nd opinion

  18. If you feel better being gluten free, just do it. You don’t necessairly need the diagnosis.

  19. My gut instinct says you need thyroid. Test for Hashimotos

  20. I found out I can’t eat gluten, lactose, onions, garlic, green peppers, corn, quinoa, beans, coffee, cucumbers, cabbage, and a few more. This helped me and now I am on a low FODMAP food plan.

  21. My biopsy and initial blood work was negative but I carry the genetic mutation. I cannot be diagnosed with celiac but they treat it as such. If you felt better being gluten free keep it going.

  22. My question is, did you feel better when you were gluten free?

  23. Why take a crazy drug with side effects when it costs no harm to your body to be gluten free?

  24. Ditch the doc.

  25. Reglan/metaclopromide was what they used to use for motility issues but it cause weird side effects like facial twitching that was permanent :(. Maybe they dont have anything else at this point. Either way, i would find a new dr. Did they even do a motility test..gastric emptying test?\nI feel for you, its so hard to find a good dr or just one who cares…they are out there tho…few n far between 🙂

  26. Please go see a integrative medicine doctor. My family member tested negative on scope and colonoscopy and blood tests for celiac but she can’t eat gluten. Digestive enzymes and probiotics eliminated motility issues. Read about leaky gut and see if you have any of these symptoms. My family member tested positive for fructose malabsorption. Low fodmaps diet has helped tremendously. Regular doctors prescribe drugs for symptoms – integrative doctors find the root cause! Good luck to you!

  27. Yes ditch the dr.

  28. I had 2 GI doctors tell me if you’™re already on a gluten free diet prior to testing, it will show up negative.

  29. That’s shocking ditch the dr

  30. I took dom until I had to retire. I couldn’t afford it anymore. I would stay on it if I could. I can’t take raglan anymore, due to facial symptoms. It works well!

  31. I would get another opinion or see a natural Dr

  32. The doctor said he couldn’t find blunting of the villi on my endoscopy either but mysteriously I had lost 50% of my iron receptors. I had been gf for 4 years prior to the test. Just because they couldn’t find blunted villi does not mean you do not have celiac and I wouldn’t even try a drug that wasn’t in a clinical trial or cleared by the FDA. In this case I’d follow Christina Donaldson’s advice and seek out another opinion or try a naturapath – and stay GF. If you still have symptoms try the FODMAP diet and also try cutting dairy, soy and sugar as these all cause inflammation as well.

  33. If you get regularly constipated and are worried about taking supplements or pills… try the shower enema system. It’s natural (movie stars do it lol) and it runs around 35 bucks on amazon, easy to install and I’ll tell ya – it’s made me a lot less uncomfortable since I’ve used it.

  34. See a naturopath or functional MD- have you ever tried the autoimmune paleo protocol or GAPS or any other gut healing/low inflammation diet?

  35. Also there are SOOOOO many natural remedies to aid in gut motility- such as castor oil and coffee enemas..I would try those

  36. See, the thing is I don’t even think I have a motility issue.

  37. Your biopsies and blood test are meaningless. If you haven’t been eating gluten, there’s no damage which means there is no evidence of celiac. You need a new doctor for sure and in the meantime, start back on gluten so that you can be properly tested. You need about 1 slice of bread a day for 8 weeks.

  38. I took domperidone for 5 years to make milk for my babies. Ordered it from Thailand.

  39. Look into other autoimmune conditions!! Most are triggered by gluten even though testing may not show up as positive for Celiac disease! You might want to try AIP in the meantime.

  40. What’s motility Issues?

  41. I don’t have celiac but have a gluten sensitivity. Non gluten diet works for me feel great!

  42. Find new dr

  43. He wants to experiment on you. I would get a new doctor. You don’t need a doctor to tell to eat healthier. If you feel better on a diet of naturally gluten free food, then there is your answer.

  44. RUN! To a functional MD who can really find out what is going on with you.

  45. Domperidone is used frequently in the UK, I’m a nurse here

  46. Run run run run

  47. Update: I contacted the new GI doctor today. I explained what was going on and they offered for me to come in today! I wasn’t able to get there today (first day back at work since the holidays), but they scheduled me for January 22. Here’s to 2nd opinions!

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