Engaged To Sick Man...help

[Tracess]

Hello everyone. I am engaged to a 33 year old man who I believe has Celiacs. The past year he has been in the hospital at least 12 times. He was 210lbs. When we met and is currently 140lbs. He has been dxed with acid reflux,IBS. He has had every test done by his gastrointestinal specialist known to man and is known as the "million dollar man" by the hospital staff due to him having every test done at least twice!!! Finally his Doctor recently referred us to Tulane Medical in New Orleans to see a team of experts who are supposed to help us! We have been waiting for our appointment with Tulane for over 4 months. It is during this time I decided to do something to help him since I could see he was dying slowly and we were not getting answers. His last illness he told me he felt so bad he wanted to die and I asked him if he would try gluten free diet? He agreed. I have been coming here and reading and learning. Thank you all for helping you are all amazing!!! Since the diet we have noticed HUGE changes!! He's feeling great and has energy. He thinks I have saved his life. Unfortunately this week he accidently ate something with gluten and he was hospitalized for two days. He vomits excessively sometimes for days, cries with stomach pain which he describes as a fire inside. He also has nausea. He is obviously malnourished and loses weight quickly when he has an attack. Once he was so dehydrated he showed signs of stroke and had kidney issues. This last visit to hospital doc told him he thought he had no signs of celiac disease.???????? So I'm wondering what is the deal? I've read the symptoms and he does have them!!! How can doctors say that????? He also said continue the gluten free diet...lol. I just want to help him and understand. Thanks for listening any comments or questions are welcomed. Does it sound like we are on the right track?

[Takala]

Doctors diagnose by test results and if those test results don't show a certain thing, they cannot formally diagnose. This means blood tests should show a certain level of antibodies to the wheat family of proteins, and immune reactions, and the lining of the small intestine should show damage.

However, there are plenty of people around (myself included) who were never able to get that "formal, official" diagnosis, but who are obviously gluten intolerant by the symptoms, (do a search on "neurological form of celiac" which is more common than realized) and who have recovered much of their health after going on a gluten free diet. The medical profession researchers and some wise doctors are starting to recognize non celiac gluten intolerance as a real disease - some are undiagnosed celiacs, and some are just, well, gluten intolerant.

If the doctor said continue doing the gluten free diet, that is great, it means yet another one is starting to catch on.

[squirmingitch]

Tracess, first BRAVO to you!!!!!!! Your fiance' is the luckiest man alive to have such a smart, savvy & loving gal. And welcome to the board!

You said he has had every test known to man but the biggest question is: Did any docs ever do the celiac panel on him &/OR do an endoscopy where they took samples to biopsy for celiac disease?

And if the answer to either of the above is yes then you need to get the test results (along with the ref. ranges) & post them here. So many docs do not even know what the full celiac panel is & some don't even know how to interpret the results. Some docs do an endo but do not take biopsies. BAD, BAD, BAD!

And can you tell us any other health issues he has? And his families health history?

Last but not least --- he certainly has a problem with gluten one way or the other!!!!!! With his severe reactions; he will never be able to go back on gluten to do testing.

[Tracess]

Thank you! Yes he has biopsies as well as endoscopy. He also had an EU done and the doctor said he saw nothing to concern him. I will get the results for that. His first doctor showed me pics of the scope and said he saw inflammation in his stomach where the food exits. He also said he saw ulcers. The gastrointestinal specialists repeated the tests and found none of those. My Fiance's mother told me that that even as a child his digestion was odd. They used to call him a "Seagull" because he would eat and go. He has always had bad stomach. He also gets migraine headaches. He has had high blood pressure as well. Other than this he seems pretty healthy. His mother has been dxed with diverticulitus. She too is a "Seagull"...so I wonder if she should have genetic testing done too? When he has an attack I find him very hard to deal with. He cannot rationalize . Guess the pain is that bad. Thanks for your reply!! Glad I found you all know so much!

[squirmingitch]

Please do get those test results & post them -- there are people here who are very good at reading them.

Yes, it wouldn't hurt his mom to get genetic testing done either.

Question --- is he or has he ever been on Lisinopril for the bp?

Have you read this? It's a great place to start:

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

And I can't emphasize enough, especially in light of his severe reactions, the importance of a whole foods diet for at least 4 months for him. That will insure he doesn't get glutened & allow him to safely heal some. No processed food at all! Not even gluten free processed food. Meats (fresh), fresh or frozen fruits & veggies. You could get some Once Again Organic PB or other nut butters & some nuts but make sure they are gluten-free! Nuts.com has great gluten-free nuts. Just click on their gluten free tab.

And ask anything, anytime. We are here for you both! Glad you finally posted. This diet can have slippery slopes in the beginning so just keep reading & learning & asking.

All those doctors & all those tests & you figured it out. Shall we call you Dr. Tracess?

[1desperateladysaved]

I have heard of a couple of cases where a person was up from the grave, because they changed their diet. So glad he has you, Traces, to help. It sure sounds like you are on a good trek.

It is very hard to get better. It is a long path with many turns and dips. Have patience and endure. Not only the sick one is on this trip, but all of those that know him.

I know I had bouts with depression because I was getting better. Along with some joy one realizes what has been lost. One has had to live with problems for years, because they didn't know how to solve them. Yet, I feel like ignorance is bliss. One can't do what they don't know how to. No diet is easy. While at the same time, knowledge is power. When You find something that works you can do it.

So you found something that seems to work and I hope you can keep doing it. Perhaps you all are still young and he can become healthy, strong, and energetic in the future.

[Lisa]

With a HUGE change in the diet, I would continue and keep a food log as well.

Go 100% as best is reasonable. No processed foods, only natural. Fresh veggies, fruit, potatoes, rice, meats and fish. Eliminate dairy for two months. Lots of water and some gluten free/dairy free probiotics to put some healthy bacteria in his system.

A daily supplement (gluten free or course) and extra B-12.

No shared toaster, or double dipping into the mayo or peanut butter. No chance of cross contact, with gluten. Call his meds sourse....ie anything that can come into contact with the mouth - and on to the digestive system.

AND don't loose contact with his medical doctor. We are not doctors and would not/could not diagnose him with Celiac. Confer progress or lack of it with his medical professional.

I hope this was helpful.

[Tracess]

Thank you all! I will post results we are going to Tulane on Friday for the long awaited appointment and I will ask for the results then because they will have all his records. Yes I can see this diet is going to be very difficult for him because he LOVES fast food. Its been difficult and he's a picky eater on top of it all. He hates vegetables and most of his diet is dairy and eggs and such. I have noticed when he eats things like beans he has alot of issues after cramping and gas. More so than a normal person. So many things he can't have....we have both been on diet and its easy for me cause I love all the fresh whole foods and love vegetables!!!! Y'all have been so helpful. I'm so lucky to have found y'all. Thanks so much!!!

[squirmingitch]

He will come around to the diet when he becomes more accustomed to how good he feels. And I daresay that somehow a change takes place within us when the body is free from the grip of gluten where we become turned off by even the thought or smell of gluteny foods & our bodies & hence our brains tell us that fruits & veggies really DO taste good.

Good luck on Friday & keep us posted!