A Slow Decline

[hammer44]

Over the past 4 years I have been in a steady decline healthwise. I started out a very fit 6'1 225 and currently am a wrecked 196.

The symptoms started with a little dizzyness, nausea and a general feeling of not being totally there (brain fog). It proceeded to chest pain, palipitations and a racing heart and other panic attack type symptoms. It ended in severe cramping in my pecs and pins and needles feeling all over my body. In fact the symptoms became so severe and numerous I had a hard time explaining to the doctors all that was happening.

My insurance company must hate me because Ive had the million dollar workup. Cardiac, Neurological, multiple ER visits and the GI doc. My complaints to them were always the same, I feel great when my stomach is empty but as soon as I start to eat my day goes downhill from there.

After spending a weekend at Froedert 3 years ago getting checked for seizures and a full heart workup my GI Doc diagnosed me with GERD. Ok great I thought I can get back to normal, not even close. I graduated from Prilosec to Nexxium to Protonix to Kapidex, each wrecking my stomach worse than the next, meaning these drugs simply let my food sit in my stomach without digesting for many hours (sometimes up to 12 hours later I would have remanents of my last meal that I would vomit out to releive the pressure in my chest. I switched to apple cider vinegar and that at least has my stomach functioning again but has given me a severe case of diarreha.

Last week I tested positive for the Celiac gene and an Endo confirmed my villi to be worn down extensively. I am still waiting on the bloodwork but am hopeful that I do have Celiacs so I can get back to rebuilding my body.

Thank you Celiac.com, this site has given me hope when I had little left.

[lovegrov]

From what you've said, even if the bloodwork comes back negative or borderline, I would urge you to try going gluten-free. You have nothing to lose.

richard

[chasbari]

So much of what you have experienced mirrors my experience, especially with post meal symptoms. Once I was diagnosed and went on a very strict gluten free diet the turnaround was incredible. I found I could not tolerate many of the gluten-free alternate grains and have had great success on a Paleo diet. I just added in goat's milk yogurt after 6 months without any dairy at all. I am able to tolerate heavy workouts once again and am responding to them as never before. I am also far more disciplined with my diet than at any time before as well and can now tolerate activity immediately after eating. I used to have to wait up to several hours if I didn't want to have major vision, vocal and kidney problems. Once I switched to paleo the heartburn/reflux rapidly went away and has stayed away. I hope you are able to have success with all of this.

CS

[flourgirl]

Hammer.....your experience sounds like a lot of us. I, too, did the million dollars of testing...which continued even after I got a diagnosis! My doc didn't truly understand Celiac and was convinced I was dying from some cancer or other physical malady. A great many problems cleared up with the gluten-free diet, but I also have been diagnosed with other immune "illnesses" since then.

I have no doubt you'll get your diagnosis (the villi damage alone indicates this), and that you'll feel ever so much better on a gluten-free diet. Be patient with your body, tho'. It may take time. After all, it's been suffering increasing damage for a long time. Then again...you may heal quickly like others do. Keep us posted, and stay in touch here. Lots of great info. and support!

[hammer44]

Well got all my test results back.

Another batch of bloodwork revealed nothing except I carry the gene.

An Endoscopy revealed duodenitis and "results associated with Celiacs".

This was 2 weeks ago. Since then Ive been gluten free. Have had some great days and some better days but none where my body is sapped of all energy. At least I can function as a normal person again. Now I just hope the damage I did to my body can be healed over the next months.

Thanks for all the info on this site, truly enlightening.

[ravenwoodglass]

Well got all my test results back.

Another batch of bloodwork revealed nothing except I carry the gene.

An Endoscopy revealed duodenitis and "results associated with Celiacs".

This was 2 weeks ago. Since then Ive been gluten free. Have had some great days and some better days but none where my body is sapped of all energy. At least I can function as a normal person again. Now I just hope the damage I did to my body can be healed over the next months.

Thanks for all the info on this site, truly enlightening.

There are ups and downs at first. It took awhile to get as sick as you were and it will take a bit of time to heal. Heal it should though. I hope you are feeling better soon. To speed the process you should limit or delete dairy for a bit. Add it back in after you heal. Those damaged villi produce the enzyme you need to digest dairy so giving up dairy should help in the beginning.

[Tigercat17]

There are ups and downs at first. It took awhile to get as sick as you were and it will take a bit of time to heal. Heal it should though. I hope you are feeling better soon. To speed the process you should limit or delete dairy for a bit. Add it back in after you heal. Those damaged villi produce the enzyme you need to digest dairy so giving up dairy should help in the beginning.

Hi Ravenwoodglass,

I was thinking about what you said about the villi producing the enzyme that we need to digest dairy.

Sorry, I know I'm changing the subject a little bit. I just wanted to get some else's perspective on this.

I'm only two months gluten free & I've been eating very little dairy. I even cut it out totally for about two weeks & just slowly started adding it back it recently.

I've been drinking the "Almond Dream" milk I'm wondering if I'm having a reaction to it. I've been drinking it for the last three morning & it's the only thing that's new in my diet. I feel soooo bloated & full. It feels like my stomach is not digesting fast enough & I'm having trouble eating a full meal.

I'm also on Prevacid for about 4 weeks now. I had very bad acid reflux & it seems to be going away & my esophagus & throat feel like they're healing somewhat. My doctor wants me to be on it for a total of 8 weeks & since my throat is feeling a little better I really don't want to stop taking it. But I'm wondering if it's causing the "full feeling," also. I'm so skinny & it's really important that I eat as much as I can.

I was thinking of stopping the Almond Dream today & see if I feel better & take the Preacid & see what happens. Do you think maybe my stomach is just not healed enough to digest the Almond Dream milk or could there be a Cross contamination issue with the milk since the Rice dream is not completely gluten free? Or maybe I'm just not healed enough to digest it properly? It seems I get the same reaction with Rice milk too -just get extremely bloated.

Thanks!

[ravenwoodglass]

Hi Ravenwoodglass,

I was thinking about what you said about the villi producing the enzyme that we need to digest dairy.

Sorry, I know I'm changing the subject a little bit. I just wanted to get some else's perspective on this.

I'm only two months gluten free & I've been eating very little dairy. I even cut it out totally for about two weeks & just slowly started adding it back it recently.

I've been drinking the "Almond Dream" milk I'm wondering if I'm having a reaction to it. I've been drinking it for the last three morning & it's the only thing that's new in my diet. I feel soooo bloated & full. It feels like my stomach is not digesting fast enough & I'm having trouble eating a full meal.

I'm also on Prevacid for about 4 weeks now. I had very bad acid reflux & it seems to be going away & my esophagus & throat feel like they're healing somewhat. My doctor wants me to be on it for a total of 8 weeks & since my throat is feeling a little better I really don't want to stop taking it. But I'm wondering if it's causing the "full feeling," also. I'm so skinny & it's really important that I eat as much as I can.

I was thinking of stopping the Almond Dream today & see if I feel better & take the Preacid & see what happens. Do you think maybe my stomach is just not healed enough to digest the Almond Dream milk or could there be a Cross contamination issue with the milk since the Rice dream is not completely gluten free? Or maybe I'm just not healed enough to digest it properly? It seems I get the same reaction with Rice milk too -just get extremely bloated.

Thanks!

If almond dream is made by the same company as Rice Dream I definately would drop it. You really can't trust that company IMHO since they have removed the barley from their ingredients on the RD I would think they might do the same with the AD. Pacific makes almond milk that is for sure safe. Hemp milk would also be a good alternative. I really like the chocolate but only drink it rarely as I will go through the whole thing in a day.

[Tigercat17]

If almond dream is made by the same company as Rice Dream I definitely would drop it. You really can't trust that company IMHO since they have removed the barley from their ingredients on the RD I would think they might do the same with the AD. Pacific makes almond milk that is for sure safe. Hemp milk would also be a good alternative. I really like the chocolate but only drink it rarely as I will go through the whole thing in a day.

Thanks so much ravenwoodglass! You are so kind for responding so fast! I did stop it today & feel a lot better. I still have the stomach tenderness but that's been there for a while. At least I feel like I can eat today! It's funny that I started having the same symptoms that I had two months ago right before I was diagnosed with the celiac. I really couldn't eat & I felt sooo full & was losing weight & didn't know why. It was pretty scary.

There must be some barley in the Almond Dream that they're not telling us about. That's crazy that we can't trust this company. I even called them before I drank it to be safe since I heard that the Rice Dream was processed with barley. The women on the phone sounded annoyed with all my questions. I guess I learned you can't always believe what they say. Sure does make me mad. What do they think that celiac is some kind of "imagery" disease. This is a serious disease!

Sorry for the vent. It's just hard to believe there are companies out there like this. I threw the rest of the Almond Milk out this morning & won't be buying anything else form this company. I'll look for the Pacific brand you mentioned. Thanks again!