Waiting for endoscopy

[Tko2341]

Hi. Out of the blue my Dr said I tested positive for Celiac disease during my physical. They said stay away from gluten and nothing else. No referral to a gastroenterologist, and no follow up appointment.  I called one myself and told them I wanted to schedule an endoscopy and told them why. They nurse said she didn’t know anything about needing that done but that she would schedule me an appointment to talk to the Dr and then he could decide if jhe wanted to do any tests on me. They scheduled that for May 22. Am I really supposed to continue eating gluten for two months and then wait even longer to actually have a biopsy done? This is so frustrating. If I have celiac disease and I’m damaging my intestines I don’t want to continue on this way for 2 or more months. Likewise, if I don’t really have this I don’t want to change my whole diet.  Should I continue eating gluten and wait for the May appointment, do I stop eating gluten for my health, or do I call around and find another doctor?  This is hard because I don’t have any typical celiac symptoms. No pain. Just hives. My numbers on my blood test were pretty high though so something is definitely going on. 

[squirmingitch]

Do you have a copy of the labs for your blood test? It would help if you could post the #'s for the celiac panel along with their reference ranges. Did you ask the doc what prompted him/her to do a celiac panel on you? Did they mention anything about anemia or anything like that? May I ask how old you are?

Generally, the gold standard is positive blood panel plus positive endoscopic biopsies. Yes, you have to be eating gluten every day until the endoscopy is over unless it's going to be a long time & then you can quit but you will HAVE to start back up at least 2 weeks before the endoscopy. AND the GI may want to do further blood on you if you weren't given a FULL (that is 6 tests) panel by your doctor & if he wants more blood, then you better NOT stop eating gluten yet. 

I will warn you!!!!!!!!!!!!! IF you stop eating gluten now & then go back to eating it for an endoscopy you almost assuredly will get much, much stronger reactions when you start back up eating it.

You should call your doc who did the blood test & ask if he/she intends to refer you to a GI.

[Tko2341]

I’ve been getting hives daily for a year or so. They don’t last long but come and go through out the day so I asked my Dr to check for food allergies when I got my physical done. They called and said I was deficient in vitamin D and tested positive for celiac disease. Then said stay away from gluten and sent me a prescription for vitamin D. That’s it. No explanation or request for a follow up. I attached what my blood work showed regarding celiac disease. That’s all they did. 

[Tko2341]

I am 43. I forgot to add that in my response. I honestly don’t ever feel sick from food. I get bloated occasionally but my only chronic issue is the hives 

[squirmingitch]

Um yeah, you're off the charts high there on both tests. The first test there, the IgA that says sufficient is just a control test to make sure you react to IgA. Sometimes when a patient is off the charts high, the doc will dx based on blood work alone. That plus the Vit D deficiency pretty much says it all.

So welcome to the club you never wanted to be a member of. LOL!

As to symptoms..... over 50% of dx'd celiacs did NOT present with GI symptoms. Look up symptoms on the internet however, & you will see GI, GI, GI, GI symptoms & not much else. There are over 200 symptoms associated with celiac disease. If you think you need a biopsy to confirm so you don't doubt the dx later & decide you don't need to be strict on the diet, then I urge you to get a biopsy. Celiac disease is serious & left untreated can ultimately, worst case scenario, kill you. It at least makes you wish you were dead. 

Read this:

Once on the gluten free diet, you may find things you didn't think much about as far as health symptoms go, have disappeared. 

[squirmingitch]

Also, since this is a genetic disease, and can present at any time in life, all your first degree relatives should be serum tested about every 2 years in the absence of symptoms and immediately if symptoms present. That means your kids, parents, siblings. If any of them have been gluten free or gluten light, they will need to have been eating gluten every day in the 12 weeks prior to the serum panel.

Your bloating is certainly a symptom. You may also find that the hives resolve.

[cyclinglady]

Hey TKO! 

Every major celiac center recommends a biopsy to diagnose celiac disease.    Is there some reason that your PCP will not refer you to a Gastroenterologist when all the leading celiac research centers recommend it?   I would suggest printing off diagnostic recommendations and sharing them with your doctor in writing!  Do not call and talk to a nurse.  Send a letter.  It is your right!   Be nice, but show your concern.  Here are a few:

Open Original Shared Link

Open Original Shared Link

I attended a lecture in January given by Dr. Shelia Crowe, a celiac expert out of San Diego and a Gastroenterologist (GI) who was the head of the American Gastroenterology Association in 2017.    An endoscopy is still part of the diagnostic process.  It is a shame, but it is what it is.  

Now, perhaps, there are reasons for not ordering the referral.  For example, you might live in a rural area, lack insurance,  or finances to do the biopsy.  But if you are able, I would recommend a biopsy.  For one, it eliminates any doubt in the future.  Second, it can provvide your GI (and you) with a benchmark.  How bad is the damage?  It can rule out other things like SIBO, H.Pylori, Crohn’s, cancer,  etc. that you could have in addition to celiac disease.  I had a repeat endoscopy after being gluten free for five years.  My first biopsy revealed a Marsh Stage IIIB.    The follow-up biopsy revealed a healed small intestine, but found that I had a stomach polyp and chronic autoimmune gastritis which is not related to celiac disease.  I had some gut issues and kept blaming celiac disease.   Now my GI can monitor my stomach for cancer.  

So do more research and decide what is best for you in your situation.  You and your doctor have all the facts! 

Finally, I had hives last year from either a celiac flare-up or Hashimoto’s flare (my allergist blames the Hashimoto’s) or an unknown new autoimmune issue.  In any case, a daily cocktail of H1 and H2 antihistamines certainly helped relieve the itching.  My hives resolved within six months (daily eruptions, over a thousand all over my body) and I stopped the medication.  I get them now after a bug bite.  Hundreds all over!   When I was initially diagnosed, I had no hives or GI issues.  Just anemia.  Celiac disease symptoms can evolve and wax and wane!  Not to mention that the often overlap with other illnesses. 

Good luck!  Squirmingitch has given you excellent advice.  Read through the forum for more advice.