Polymyalgia Reumatica

[sherrylynn]

Saw the new doc today. He said he thinks I am right about celiac. He said he also thinks I have IBS too. and Polymyalgia Rheumatica, and an ulcer, plus asthma, and food allergies.

He said he does not think I have real Lactose Intolerance, but that it is really Celiac Dz.

I went from no medications to taking 5.

He also said I am to go on the Gluten Free Diet immediately.

I wanted a doc to take me seriously, but ohhh boy. I am overwhelmed.

[mushroom]

Saw the new doc today. He said he thinks I am right about celiac. He said he also thinks I have IBS too. and Polymyalgia Rheumatica, and an ulcer, plus asthma, and food allergies.

He said he does not think I have real Lactose Intolerance, but that it is really Celiac Dz.

I went from no medications to taking 5.

He also said I am to go on the Gluten Free Diet immediately.

I wanted a doc to take me seriously, but ohhh boy. I am overwhelmed.

You might be surprised how much of this stuff goes away in the absence of gluten. Some of it might not , but a lot of it does. The lactose intolerance is probably because your villi are damaged, and the lactase to digest it is produced at the tips of the villi. When the villi heal you should be able to handle lactose again, for example. Many people find their asthma and allergy symptoms clear up in the absence of gluten. I was first diagnosed with polymyalgia rheumatica. T'was a wrong diagnosis, but unfortunately mine went worse instead of better - that says nothing about what will happen to you. And almost all of us on here who have had digestive symptoms have been diagnosed with IBS. So don't be so overwhelmed - gluten is probably at the heart of most of it (here's hoping at least). So avoid gluten strictly, and lactose, and prepare to be surprised.

[sherrylynn]

Thank you Mushroom, I have started my gluten free diet tonight. I am going to have a time of it though, I am going to college full time during the week and do not know what I am going to eat a school. I guess I am going to have to pack a lunch of veggies and left over meat.

Have you ever heard of Bentyl? That is one of the meds the doc has me on. As well as Prednisone and Carafate.

He also thinks I am not producing Enzymes and that my Pancreas is not working like it should as well as my gall bladder not working.

Boy am I messed up. I do hope that this diet will work. I wonder if my Panceas and gall bladder will heal on the diet.

[mushroom]

Thank you Mushroom, I have started my gluten free diet tonight. I am going to have a time of it though, I am going to college full time during the week and do not know what I am going to eat a school. I guess I am going to have to pack a lunch of veggies and left over meat.

Have you ever heard of Bentyl? That is one of the meds the doc has me on. As well as Prednisone and Carafate.

He also thinks I am not producing Enzymes and that my Pancreas is not working like it should as well as my gall bladder not working.

Boy am I messed up. I do hope that this diet will work. I wonder if my Panceas and gall bladder will heal on the diet.

Gluten free and college is a hard mix. As long as you don't have to live in the dorm you should be able to manage lunches though.

I am not familiar with Bentyl but it appears to be a drug prescribed to treat IBS, which is what most of us have been diagnosed with over the years before coming to know that gluten was the problem. Prednisone is a powerful anti-inflammatory drug which I do not tolerate. It is best to take as little as possible for as short a time as possible, as it is a drug that you have to slowly wean yourself from. Celiac disease does cause inflammation of the gut. Carafate is used to treat ulcers. I would be interested in knowing why he thinks you have ulcers.....

I would agree with him that it is entirely possible that your pancreas is not working properly and not producing the enzymes necessary to digest your food. If I were you I would check with a good health food store, find someone knowledgeable, and buy a good digestive enzyme supplement. Also, the best probiotic that you can afford. This will help to heal your gut and fill it with good bacteria to counteract the bad guys that gluten permits to take over. Doctors naturally think in terms of medications (what the drug companies push on them) rather than supplements to help your body work better naturally, which I personally think is the better way to go. Sooner or later, your body is going to have to start doing this stuff for itself again.

As for the gall bladder, many on here have been diagnosed with gall bladder problems, many have even had their gall bladder removed with no relief of symptoms, until they went gluten free. It is possible your gall bladder is okay.

Do you have a primary care physician who can order blood work (or can the rheumy do it for you) to check that your are not nutrient deficient. With the malabsorption and poor digestion that comes with celiac, we often end up being deficient in, e.g., Vitamins D, B12, A, K, also in magnesium, zinc and iron (ferritin). You should also have your thyroid tested for proper functioning. All these things will probably help you heal faster than any medications, though sometimes if the symptoms are severe enough medications are required to get you over the hump. That being said, many posters on the board have found that their joint pains vanish when they banish gluten Just to remind you, I am not a medical professional, these are my opinions only.

Anyway, just some ideas to send you down the happy path of gluten free healing.

[ravenwoodglass]

Mushroom has given you some good advice. I am going to add my concerns on all those scripts.

I am not a medical professional so please don't take this advice as coming from one. If you haven't been on any meds previously you may want to hold off or take a minimum amount of them for a couple of weeks. You may find you don't need them once the inflammation calms down a bit on the diet. I am assuming you had a regular GP who referred you to the Rhuemy perhaps make an appointment with him and go over the meds you have been prescribed. Some doctors overprescribe and it doesn't hurt to get a second opinion. I personally would wonder why my regular doctor hadn't medicated anything that this guy is giving you 5 scripts for.

Many of us have multiple issues that resolve gluten free. I also was on a handful of meds before I was diagnosed and had been for a long time. I weaned off them before my MD guided me through an elimination diet as I figured I wouldn't know if the diet was helping if I was still taking so many drugs. I of course did this under a doctors supervision since I had been on them for years. I never had to add even one of those drugs back.

If you do choose to take any of the scripts make really certain they are all gluten free. Check with the maker of the drug and also tell the pharmacey they need to be gluten free. Some pharms don't check so recheck yourself once you get them home or before you pick up the scripts ask for the name of the maker from the pharmacy and call. Calling first is best as once you take the scripts out of the store they can't be returned.

I am going to restate that I am not a medical professional but I do think you would benefit from having a second opinion on all those scripts. To go from none to 5 all from one doctor visit seems excessive.

[Skylark]

Thank you Mushroom, I have started my gluten free diet tonight. I am going to have a time of it though, I am going to college full time during the week and do not know what I am going to eat a school. I guess I am going to have to pack a lunch of veggies and left over meat.

Have you ever heard of Bentyl? That is one of the meds the doc has me on. As well as Prednisone and Carafate.

He also thinks I am not producing Enzymes and that my Pancreas is not working like it should as well as my gall bladder not working.

Boy am I messed up. I do hope that this diet will work. I wonder if my Panceas and gall bladder will heal on the diet.

I took Bentyl when I was a child. It's an antispasmodic that's safe and mild. I never got over stomach viruses very well and the Bentyl would help settle things down. You probably won't need it once your intestine heals. It may make you a little drowsy, as it's an anticholinergic.

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I agree that five meds at once is a little heavy-handed, particularly the prednisone. Presumably the Carafete will be a short-term thing to heal the ulcer. Your asthma and food allegies may improve gluten-free. Mine did, although I am still on Singulair for the asthma.

[sherrylynn]

I am so glad I found you guys. The prednisone is for 10 days only. I won't take it any longer than that because it will cause weight gain too.

But the Bentyl I am taking for a while until I heal and I am hoping you are right about the allergy's. The doc I am seeing I know from work and he was surprised that my PCP doc has not addressed any of my problems.

He thinks I have a ulcer because I told him a few times I have had black stool and fatty stool where the oil floats. when he felt of my abdomen he was checking my gall bladder then when I gasped he said "oh I think you have an ulcer" He is going to have a CT of my abdomen to check for that as well as my pancreas and my gall bladder.

He also is checking my Celiac panel and I think he is checking to see if I am deficient in my vitamins and iron. The lab drew 6 vials of blood from me. If I wasn't anemic then I am now hahaha.

Today has been my first day of gluten free. At school I found that there is really nothing they offer to eat for lunch that I trust. I ate some sushi rolls. It had the ingredients on the package and it didn't have any gluten in it. But I can't eat sushi every day. So I am going to brown bag it. Or wait until I get home to eat.

When everyone went gluten free did any of you get run down feeling from not having much carbs?

Thank you to every one who responded. I think every thing is going to be OK now.

[Skylark]

I have no problem finding gluten-free carbs. Corn chips, potatoes, tortillas, rice, gluten-free breads, gluten-free pasta... it's all available. Brown bagging works much better for celiac. A lot of us cook all the time and take leftovers to work. I hope the diet helps you.

Fatty stool could just be celiac malabsorption. I don't know about black but your doctor will sort that out.