Advice Please

[Blue14]

I was just informed that I have celiac disease. But my doctor says that it doesn't cause pain. When that's how testing started in the first place was bc of my pain. Scoping studies show ulcerations in my intestines and stomach. My doctor will give me nothing for pain or to clear inflammation up. Is this normal protocol? I have debilitating pain and nausea.

[nvsmom]

I would disagree with your doctor, pain is a very common celiac disease symptom from GI pain to migraines to arthritis.... I had all three.   I do agree that there is nothing special to give a celiac for painbeyond a typical; pain killer, and there is nothing I know of to help clear our body of inflammation faster beyond clean eating and living.

 

L-glutamine is thought to help in the healing of the intestines (and muscles) so it might help.  Probiotics can help too. Some need digestive enzymes for a while, and others need to be milk and dairy free for 6 months or so until they are healing (lactose intolerance can be quite uncomfortable).

 

Welcome to the board.

[Blue14]

Thanks for replying. Just spoke with doctors office again trying to get answers. Now I'm being referred to a rheumatologist. And have to have more bloodwork! I Have sores from my mouth to the end. I do have the migraines!!!!! I'm Just so frustrated!!!! It's the holidays and I feel soooo ill. I have no energy, nausea, and the pain makes me break out in sweats. My doctor will not give anything except antacids. Who treats this nasty disease? Gastrologist or rheumatologist? I've been reading about steroids for celiac disease. Do they help with the inflammation?

[GFinDC]

Hi,

 

Welcome to the forum Blue! 

 

Your doctor is wrong, celiac can cause plenty of pain.  The first thing you need to do is change your diet.  After you read this thread tho:

 

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Sometimes the pain in our gut is made worse by gas trapped in the innards.  That can be helped some by avoiding foods that cause gas, like dairy, sugary and carby foods etc.

 

Peppermint can help relax stomach muscles and make it easier to get gas out.

 

Aspirin can help with pain.

 

Pepto Bismol can help soothe the gut.

 

Probiotics and digestive enzymes can help also.

 

Try to stick to a mostly whole foods diet and avoid most processed foods for awhile.

 

Healing the gut takes time but the process won't get far if you are getting glutened by crumbs or flour  every day.  That where eating whole foods really helps.  Some people get relief quickly but for others it can take months for the immune response to settle down.  You should notice some improvement in a few weeks though.

[RMJ]

Aspirin and NSAIDs like Aleve and Naproxen can irritate the stomach so I'd advise against those. Sucralfate (prescription) is often given to treat ulcers - it coats the ulcerated areas. Perhaps you could ask your doctor for that. I hope you find some relief. Nausea was one of my main symptoms.

[CajunChic]

Do you have GERD? I know I'm in a great deal of pain without my nexium. I also had to cut out dairy for the first year and a half, im just adding it back in small amounts. Yay! I was also on Carafate for my ulcers, a second EGD showed they healed, so I no longer have to take that. I take activated charcoal pills to help with trapped gas, it works wonders! My gastro gave me a "gastro cocktail" at the beginning to numb my stomach when I was in intense pain. I think it was a mylanta, Benadryl, and lidocaine mix. I know that doesn't sound fun, but I was desperate for relief.

I also found I can tolerate some foods in moderation. I can eat oatmeal (certified gluten-free) but not two days in a row or in large portions. Corn, quinoa, beans, and tomatoes are the same. I had to learn to not repeat the same foods during the week. I hope you find some relief soon!

[SMRI]

Where is the pain?  If you have ulcers, he should have prescribed some antibiotics.  If it's joint pain, then prescription strength Advil or similar.  Your best recourse is going gluten free ASAP.

[1desperateladysaved]

Pain can be a symptom of celiac along with 299 other symptoms.  I am pretty sure one of these symptoms is mouth sores, .  Many of the symptoms can be reversed by following a totally gluten free diet; I am feeling much better after at least 30 years of undiagnosed symptoms.  The link is a list of known possible symptoms.  Open Original Shared Link

 

You are doing the right thing (I believe) by looking into this by yourself.  Since the disease is considered rare the doctors don't expect to see it or they don't have experience yet.  You can make a difference for yourself by learning the system and recovering.

[Blue14]

GFin thanks for all the info. I'm finding it very helpful!

CajunChic yes I have ulcers all through my GI tract seen with scoping. Also have one in my stomach and GERD. All my doctor will give is antacids and meds along those lines. I'm Living on pudding cups bc that's the only thing that doesn't hurt. He won't even try giving anything to coat my stomach and intestines to try to help with the pain. Since he says celiac doesn't cause pain. I've been eating gas x.

SMRI I do have ulcerations. I'm going gluten free. Thanks to information from all of you on what to eat.

I'm just unsure of which doctor treats celiacs? Since I'm being referred to rheumatologist.

Soooo many questions and so confused.

[mbrookes]

You need a good gastrointestinal doctor. Ask your primary to recommend one that is familiar with Celiac. Many are not. I am surprised that you were not sent to a GI doctor with your symptoms.

[Blue14]

DesperatelySaved thanks I'm trying to figure it all out.

RMJ my doctor says no to that medication right now bc of side effects.?

Mbrooks I am going to GI doctor lol. That's what I don't understand. Idk if he doesn't know how to treat or what. I got prescribed another PPI today. I asked about a course of steroids to help with inflammation and ulcerations. My scope pics look really nasty!!!! And oh so feel nasty too!!!! Idk why he thinks it doesn't cause pain. I possibly have another autoimmune disease to go along with it.