Got The Diagnosis, Doc Thinks There Is More...

[vbecton]

Okay, so I got my official Celiac Disease diagnosis yesterday. Thanks to a very good doctor who was willing to look past the obvious!

However, since going gluten-free 3 months ago I'm dealing with extreme exhaustion. I don't mean I'm tired, I mean exhaustion to the point of not functioning well. All my vitamins are back in the normal ranges, but my malabsorption is still an ongoing issue. But, that's been there forever; it's nothing new for me.

The doctor ran a new batch of blood work to test for amino acid deficiencies, more indepth iron protein malformations, etc... I'm an athlete, so the muscle weakness is becoming ridiculous. It's getting worse, not better. I know exactly when I've been glutened, so that's not the issue. I consume about 3000 calories, 120g+ protein, 120g+ carbs, etc... I'm certainly not starving my muscles and I've still dropped 6 lbs this month.

My doctor mentioned intra (?) something Celiac, but can't remember the name. Not refractory, but intra. He said he's got some Celiacs who just don't respond to the gluten-free diet especially the malabsorption problem. Some have clean endoscopies, but views of the lower intestines show damage, or possibly another GI problem. The treatment for this is gluten-free diet + steroid treatments. EWE...I no likey steroids!

I really hate the idea of a gluten challenge to do the pill camera. Ugh, but this exhaustion is NOT me. Not even one tiny bit! Any ideas about this? And what type of Celiac is he referring to?

[ravenwoodglass]

I don't know what he is referring to but I do have a question for you. Are you consuming soy? Many folks that need a high protein diet, like atheletes use soy as a protein source. Many of us are intolerant to it. If soy is part of your diet do eliminate it for a while and see if that helps.

Also you said your nutrient levels are good in your bloodwork. What was the level for B12? Many of us need to supplement with sublingual B12 tablets for a while after diagnosis. If you don't take one already you may want to add some in.

[vbecton]

I don't know what he is referring to but I do have a question for you. Are you consuming soy? Many folks that need a high protein diet, like atheletes use soy as a protein source. Many of us are intolerant to it. If soy is part of your diet do eliminate it for a while and see if that helps.

Also you said your nutrient levels are good in your bloodwork. What was the level for B12? Many of us need to supplement with sublingual B12 tablets for a while after diagnosis. If you don't take one already you may want to add some in.

Thanks for your reply. I wish I could blame soy, but I'm soy free. Have been for 2 months. I use a great protein shake, Biochem 100% Vegan Protein and it's delish if anyone wants to try it (gluten, dairy, soy, yeast, preservative, artificial color, flavors and sweetener free ).

My B12 was 343 (range 211-946). I'm on sublingual B12 and the doc said I'll probably need that for lifetime.

I feel like I'm in a constant state of a category 5 brainstorming hurricane trying to figure this all out. Forget the steriod injections, I would prefer some pinot grigio injections

[ravenwoodglass]

Thanks for your reply. I wish I could blame soy, but I'm soy free. Have been for 2 months. I use a great protein shake, Biochem 100% Vegan Protein and it's delish if anyone wants to try it (gluten, dairy, soy, yeast, preservative, artificial color, flavors and sweetener free ).

My B12 was 343 (range 211-946). I'm on sublingual B12 and the doc said I'll probably need that for lifetime.

I feel like I'm in a constant state of a category 5 brainstorming hurricane trying to figure this all out. Forget the steriod injections, I would prefer some pinot grigio injections

I noticed the Green's and Whey of the Biochem also says gluten free but it does contain barley grass which is an issue for many of us. Not saying this is the case but I wonder if the one you take could either be made with barley grass or processed on the same equipment. The Vegan form also contains xylitol which is a sugar alcohol. Some of us will have issues with those.

Have you tried switching to a different supplement for a couple weeks to see if that improves things?

[vbecton]

I noticed the Green's and Whey of the Biochem also says gluten free but it does contain barley grass which is an issue for many of us. Not saying this is the case but I wonder if the one you take could either be made with barley grass or processed on the same equipment. The Vegan form also contains xylitol which is a sugar alcohol. Some of us will have issues with those.

Have you tried switching to a different supplement for a couple weeks to see if that improves things?

POOP! I just found this shake last week and I thought I hit the jackpot. The vegan shake doesn't have barley grass, but is processed in the same place. Xylitol may pose an issue. How will I know? The exhaustion was way before this shake, so it could blend in

[ravenwoodglass]

POOP! I just found this shake last week and I thought I hit the jackpot. The vegan shake doesn't have barley grass, but is processed in the same place. Xylitol may pose an issue. How will I know? The exhaustion was way before this shake, so it could blend in

One thing to also keep in mind is you are only 3 months into the diet. The exhaustion can take some time to go away. Are you eating a mostly whole foods diet with little processed food? That is the best way to go. Have you changed over cooking prep items that need to be changed like colanders, wooden utensils, toasters etc? Are you living in a home with others that still eat gluten? If so you need to be really careful. In addition if you take supplements or any meds, script or OTC you need to check to be sure they are gluten free. Be aware that supplements can have barley and wheat grass and still carry a gluten free label so do be sure to read all ingredients.

[T.H.]

First - my doc mentioned that adult diagnosed celiacs can take up to 2 years to fully heal, so 3 months is just a drop in the bucket, eh? Crossing my fingers that all your body needs is time! I lost about a pound a day for the first month or so, and then slowly continued to lose up until about 5 months gluten free.

Second - has he looked at Crohn's disease or talked to you about it? There's a slightly higher chance of having it, if you are a person with Celiac, and I know the closest thing to a treatment for it is steroids, as well. I think the other is avoiding 'trigger' foods.

Third - Looking at your signature, I wouldn't be surprised if you might have other food issues, too. Things that my doc said a LOT of his celiac patients have problems with in their food: dyes, additives, preservatives, GMO foods (you have to go organic or make a LOT of phone calls to avoid these). Also, he said some of his patients have a problem with anything in the grass family for a little while after going gluten free. So that's sugar cane, bamboo, and all the grains (including corn, which seriously, you need to look on an allergy website to fully avoid. It's in iodized salt, powdered sugar, everything). Oh - buckwheat, amaranth, and quinoa aren't officially grains, or in the grass family, so they are okay unless, you know, you react to them too.

[vbecton]

First - my doc mentioned that adult diagnosed celiacs can take up to 2 years to fully heal, so 3 months is just a drop in the bucket, eh? Crossing my fingers that all your body needs is time! I lost about a pound a day for the first month or so, and then slowly continued to lose up until about 5 months gluten free.

Second - has he looked at Crohn's disease or talked to you about it? There's a slightly higher chance of having it, if you are a person with Celiac, and I know the closest thing to a treatment for it is steroids, as well. I think the other is avoiding 'trigger' foods.

Third - Looking at your signature, I wouldn't be surprised if you might have other food issues, too. Things that my doc said a LOT of his celiac patients have problems with in their food: dyes, additives, preservatives, GMO foods (you have to go organic or make a LOT of phone calls to avoid these). Also, he said some of his patients have a problem with anything in the grass family for a little while after going gluten free. So that's sugar cane, bamboo, and all the grains (including corn, which seriously, you need to look on an allergy website to fully avoid. It's in iodized salt, powdered sugar, everything). Oh - buckwheat, amaranth, and quinoa aren't officially grains, or in the grass family, so they are okay unless, you know, you react to them too.

Such good points! I think I'm covered on almost all of them. I'm nearly grain free, except some rice maybe 1x per week, and a 1/2 slice of bread about the same. I generally stay away from processed things...my body no likey! I try to stick with the Paleo diet as much as possible, but I have stolen some corn chips recently, splurged on yogurt in the beginning, but no more of that. I do coconut yogurt for emergencies. I'm a meat, veggie and fruit girl. We are almost 100% organic and have been for years. We even have an organic garden in the backyard . Wish we had organic meat in the backyard. That would be dreamy! I don't eat any salt (I do take iodine from kelp), no sugar (except when I drink my protein shake, but that isn't daily), and rarely eat anything unless we grow it, or it's one pure ingredient, or a mixture of pure ingredients like my protein shake. Aside from the bread slips No additives, preservatives or dyes that I know of and my supplements are clear. I'm not reacting to anything I'm eating that I know of because my reaction symptoms are clear as a bell. I think... Oh and got new pots/pans/cutting boards/collander/beauty products/washing powder, etc...

My doc really wants to do the pill camera to check for other possible issues like Crohn's, but he really wants a gluten challenge also to check everything on or off the list. Uhhh. I don't think I'd survive a gluten challenge!

What about my endoscopy and biopsies coming back clear just recently? What does that mean as far as healing?

I guess what really gets me is I feel like I'm doing all the right things, but this exhaustion hit on day 1 of the gluten-free diet. The first 2 weeks were probably withdrawals, or coincidental. I'm apt to think something else is broken because this is like a "I got smacked by a mack truck tired!!!" For me to be tired, even for one minute, just never existed. You know, this is probably just my impatience shining through. I probably just need more time to heal, but my short attention span kicked in days ago and I'm ready to be light on my feet and running in circles!

Thanks for your replies and helping me sort through this. More like talk it out as my brain is as high-functioning as a three-toed sloth these days

[Skylark]

I was exhausted from thyroid problems last month, so I have to ask everyone who is tired if they've had their thyroid checked.

Seriously, thyroid problems are really common in celiacs.

[ravenwoodglass]

My doc really wants to do the pill camera to check for other possible issues like Crohn's, but he really wants a gluten challenge also to check everything on or off the list. Uhhh. I don't think I'd survive a gluten challenge!

What about my endoscopy and biopsies coming back clear just recently? What does that mean as far as healing?

The fact that your recent endo and biopsies came back clear is a good thing it has shown that the diet is healing you. I do not understand why your doctor wants you to redamage yourself with a gluten challenge. He can check for other things without the challenge. I personally would pass on the challenge.

[torimuse]

Have you tried taking yourself off of nightshades, beans, or corn? Some people on here have problems with those. WARNING: Corn is in EVERYTHING. Baking soda, Iodized salt, etc. Someone here posted a link to a corn allergy site (I can't remember where that was) that can help find where corn is hiding.

[vbecton]

Have you tried taking yourself off of nightshades, beans, or corn? Some people on here have problems with those. WARNING: Corn is in EVERYTHING. Baking soda, Iodized salt, etc. Someone here posted a link to a corn allergy site (I can't remember where that was) that can help find where corn is hiding.

I just looked up nightshades to make sure and I'm free of everything but tomatoes. I rarely eat those except when I have salsa about once per week. Could that be causing fatigue? I've heard some folks talk about neuro symptoms with nightshades and I've definitely lost my marbles...or so it feels like I eat corn about the same amount. I don't ever use anything like baking soda or salt, or some other processed types of ingredients. I eat pure things like garlic, oregano, etc... to spice my foods. I saw that corn allergy site. Man, that's more extensive than gluten.

[vbecton]

I was exhausted from thyroid problems last month, so I have to ask everyone who is tired if they've had their thyroid checked.

Seriously, thyroid problems are really common in celiacs.

Thyroid was just checked last month and came back normal Although, I just saw some interesting studies that said there is a huge lacking in accurate thyroid diagnosis as a patient can present with clinical symptoms, but lack lab findings. Uhhh, another disease that hides under the radar. Wouldn't it be nice if Celiac and thyroid tests were as accurate as pregnancy tests. Just pee and wait 3 minutes. If my doctor doesn't find what he's looking for on these latest tests (amino acid def, iron, etc...) I'm going to look more into my thyroid. Seems to fit the description!