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Gluten Free/gastroparesis Diet

Jaimepsalm63

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Jaimepsalm63 Rookie
Jaimepsalm63
Posted

I've been gluten free for a while here. I went gluten free before my diagnosis and still had the biopsy show a definite positive.

Still having problems with nausea I got tested for gastroparesis and was diagnosed as definitely to having it (after 2 hours my egg breakfast was still in the stomach).

I've been through so many tests I feel like a lab rat. The list is longer of what I don't have verses what I do or supposedly do have.

I have low blood pressure, Reynard's, and supposedly fibromyalgia.

I don't have diabetes or hypothyroid problems. In fact I have a hyperthyroid. I can only find info related to gastroparesis with diabetes and/or hypothyroid and give advice for those conditions. That won't help my situation.

They think I may have scleroderma of the digestive system because I'm now having problems swallowing. I'm thinking it's all inter-related but not scleroderma.

Anyway cutting to the chase, I'm on a liquid diet. Has anyone experienced this as well? I saw a topic on here about gastroparesis and suggestions about getting tested for diabetes and hypothyroidism. Seeing how I don't have those complicating what I have already, I guess I'm just looking into it and possible suggestions if anyone has any. I'm starting to lose weight again and the doctors I have are racking their brains trying to figure stuff out. I figure the more people I ask, the more brains I have working on this. I'd like to get answers before I'm underweight again. (I only have 15 pounds I can truly spare until I'm on a constant IV.)

More info that may be helpful...I was told to take Reglen and had to stop because it made me so dizzy to the point I was more sick than usual. I was given a prescription for Motilium, which is a Canadian drug. It has helped some, but I still get the nausea. I was given Phenergan to use sparingly because it slows the stomach, but can help a bit with feeling nauseous.

Thanks to everyone for looking and helping if you can.

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Di-gfree Apprentice
Di-gfree
Posted

Sorry to hear of your problems. I've been diagnosed with celiac for about 11 years now; and about a year and a half ago I started having problems swallowing, too. The food kept wanting to go down my windpipe instead. My weight dropped to 84 lbs, and I started having a constant feeling of fullness, and couldn't eat large amounts of food. I was terrified.

It's a long story of how I managed to get back up to ~100 lbs, but I still have stomach-emptying/fullness problems, and occasional problems swallowing. I have been diagnosed with Hashimoto's (a couple of months ago) and I'm hoping it has some relation to these problems. I haven't been diagnosed with gastroparesis, because I haven't gotten tested for that. By the way, my whole digestive system slowed down, so it wasn't just my stomach. Like I said, I'm hoping that my treatment for the Hashimoto's will alleviate some of this.

Did they run the whole thyroid panel on you? (iow, not just TSH?) I understand your thinking about possibly having scleroderma, too. My imagination runs wild. I'm dealing with celiac and Hashimoto's right now, and that's enough on my plate for the time being. Good luck, I hope you find some answers. Let us know what you find out, because the more we know, the better.

Jaimepsalm63 Rookie
Jaimepsalm63
Posted
  • Author

I got the whole shebang for tests. I feel like a lab rat because they did all these tests to rule out what I don't have vs. what I do have.

I don't have issues with the thyroid except it is a hyperthyroid.

I get tested every six months for diabetes because I'm prone to it with family history/having more than 1 kiddo over 9 lbs at birth. I don't have that so far.

I don't have Addison's which they suspected because of the low blood pressure.

I don't have pituitary issues either.

I don't have cancer.

I've been through barium tests, endoscopes up the wahzoo...oh wait that's the yearly colonoscopy I get. I've had MRI's and CT's. They've checked my blood for everything including seeing if I was being poisoned with arsenic somehow by rat poison (which we don't keep) or by the well water (no one else is as sick as I am).

I had my gallbladder removed. I've also been partially spaded because I was hemorrhaging so bad after a miscarriage. They said neither one of those would explain the stomach not working and now the swallowing.

I did forget to mention that the other end of the digestive system has slowed as well and I'm taking something to try and keep that going with doctor's orders. (That's the motilium. It's supposed to help the entire digestive tract not just the stomach.) With all of this slowing down and coming to a stop they're suspecting scleroderma. I won't accept that answer. I'm sure it is something else and won't accept "defeat" and give into what they're suggesting. It's not very common and I have a feeling a piece of the puzzle is being left out somehow.

Thanks for the input and I hope you don't have gastroparesis. They told me it would get worse as time went on even if it's not scleroderma.

miamia Rookie
miamia
Posted
I've been gluten free for a while here. I went gluten free before my diagnosis and still had the biopsy show a definite positive.

Still having problems with nausea I got tested for gastroparesis and was diagnosed as definitely to having it (after 2 hours my egg breakfast was still in the stomach).

I've been through so many tests I feel like a lab rat. The list is longer of what I don't have verses what I do or supposedly do have.

I have low blood pressure, Reynard's, and supposedly fibromyalgia.

I don't have diabetes or hypothyroid problems. In fact I have a hyperthyroid. I can only find info related to gastroparesis with diabetes and/or hypothyroid and give advice for those conditions. That won't help my situation.

They think I may have scleroderma of the digestive system because I'm now having problems swallowing. I'm thinking it's all inter-related but not scleroderma.

Anyway cutting to the chase, I'm on a liquid diet. Has anyone experienced this as well? I saw a topic on here about gastroparesis and suggestions about getting tested for diabetes and hypothyroidism. Seeing how I don't have those complicating what I have already, I guess I'm just looking into it and possible suggestions if anyone has any. I'm starting to lose weight again and the doctors I have are racking their brains trying to figure stuff out. I figure the more people I ask, the more brains I have working on this. I'd like to get answers before I'm underweight again. (I only have 15 pounds I can truly spare until I'm on a constant IV.)

More info that may be helpful...I was told to take Reglen and had to stop because it made me so dizzy to the point I was more sick than usual. I was given a prescription for Motilium, which is a Canadian drug. It has helped some, but I still get the nausea. I was given Phenergan to use sparingly because it slows the stomach, but can help a bit with feeling nauseous.

Thanks to everyone for looking and helping if you can.

I can';t believe how much your situation seems to mirror my own. I am in almost the exact same place. I am currently on REglan and it is killing me it helped in the begining but now just causes problems but when i stop it

I get worse so I am stuck in a bad place. I have had every test done and my motility is just terrible but they seem to be able to find nothing to help me. I am not sure what my next step is but I am so underweight and eating anything is hard for me.

Miamia

Jaimepsalm63 Rookie
Jaimepsalm63
Posted
  • Author

Hey Miamia,

It totally sucks realizing there are people out there who are as bad off as I am. I was at first thinking it would give me "comfort" knowing I wasn't alone and therefore it wasn't all in my mind, but knowing people are suffering like I am just stinks.

I'm now about 10 pounds from the constant IV. I've lost 8 pounds in 7 days here and keep losing more. My kids are finding anything that has calories that I can drink and that isn't high in sugar (due to the prone for diabetes even though I don't have it). I'm not taking enough in and it's just "going out". YUCK!

I'm thinking of begging for the Zofran prescription. I know it's like 20$ a pill, but if it keeps what I can have in my system, I'm willing to pay the money. The insurance companies hate paying for the meds, but it's cheaper than the hospital stay trying to rehydrate me.

I think the complication is the fact that I/we need the gluten free stuff on top of trying to find the liquids. Getting a couple of sips of whatever until I feel full makes it complicated....and it coming up makes it worse.

I know I'm preaching to the choir I'm sure.

I pray you get better. I'm actually hoping now I don't find anyone else that's in the same position. I know it can help knowing what tests everyone has gone through and what was found, maybe that's another reason I posted. That way I can avoid tests or get tests looked at that were never thought of before.

If you maybe can list everything you've been tested for and I know I've been tested for more than I listed...my brain is in a fog now though and seeing it in type reminds me of the, "Oh yeah, I had that done as well".

Anyone else that sees all of this if you could do the same thing, that would help all of us. Thanks a bunch.

Jaime

  • 9 months later...
Hallie Davis Apprentice
Hallie Davis
Posted

CREST scleroderma is the most common form of scleroderma, and unfortunately the docs usually do not do the anticentromere B test to check for it, if the ANA staining pattern is other than anticentromere. In my case the ANA pattern was speckled, homogeneous or nucleolar, and only once was it anticentromere. So my docs did not do the anticentromere B test. I went undiagnosed for years until this winter when a neurologist finally ordered the anticentromer B test and it came out highly positive. I also have the DQ8 gene which can cause a multitude of various autoimmune diseases. Apparently I also have at least one other autoimmune disease which masks the anticentromere ANA staining pattern most of the time. Moral of the story, if you have symptoms of CREST scleroderma (burning, aching, hurting hands or feet; tendonitis; gastric reflux or difficulty swallowing dry food (lingers in the lower esophagus); hands and feet over-sensitive to cold; ring size changes; or any combo of these), you should insist on having the anticentromere B test, and if positive, get yourself to a scleroderma center where the docs know how to deal with this complex disorder. Most rheumatologists just aren't knowledgeable in how to deal with it.

Jaimepsalm63 Rookie
Jaimepsalm63
Posted
  • Author

Thanks H****. I'll have my docs look into it. I've been going back and forth with putting weight back on and taking it off. I had the genetic tests done, I just didn't get the results written down for my own file like I should have done. I'll call my GI and ask for those results too.

Some things are looking up and others down. So it goes.......ho hum.

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