[Mandy1020]

My husband has been sick for the last year or so, but it has gotten increasingly worse over the last 5 months. He has lost almost 80 pounds and he looks so sick, it breaks my heart. About a week ago his friend mentioned that maybe he was allergic to glutten. So I have been researching and alot of the symptoms match what he is feeling. We took him to the doctor to get blood work and a referral for a biopsy. The next day we started him on a glutten free diet, and he started to feel better. He said the first 2-3 days he felt alot better, but then he got sick again. 3 days ago we had steak and salad for dinner and he threw it all up. Since then he has felt nauseous and he feels like he has a flu and was throwing up yesterday. At this point I don't know what to do, I am so worried about him. I thought that once he was on a glutten free diet he would feel better, is it normal for him to be so sick again? We can't get him in for biopsy for a month, so in the meantime I am worried sick. The symptoms match celiac disease, but could this be something else? I am worried that he is not getting the nutrition needed because he can't eat anything?

Is it normal to keep getting sick and feel so bad after starting the glutten free diet?

[ShayFL]

First welcome.

It is common to have ups and downs in the beginning as the body detoxes from the gluten. I didnt start to really feel good at all until about 6 weeks. I just had to hold on and believe everyone in here when they told me it would get better. It finally did and I continue to heal, but I am not completely well yet. It can take time.

If only it were as simple as eat gluten-free and immediately all better. The problem is that the body is "injured" and like all injuries it take time to heal (as long as you dont keep irritating it).

NOW TO CLARIFY A FEW THINGS FOR YOU. He MUST be eating gluten and plenty of it for the tests to have any chance of being accurate. If you keep him on a gluten-free diet, the tests can be a FALSE NEG and you will not get your answer. I know it is hard to keep him sick by eating gluten on purpose, but if you want the tests to be accurate you MUST. If you dont care about a diagnosis (Dx) then you can simply stay the course with the diet. But understand when he does get the tests if they come up NEG you cannot trust that result. He could still have Celiac. And you dont want to assume he DOESNT because the consequences of untreated Celiac can be grave.

NOW to the gluten-free diet. There are many reasons for ups and downs. Could be the natural healing cycle and withdrawal (gluten fits the opiate receptors in our brains and is an addictive substance). Or it could be CC (cross contamination). CC can be from marinades. Spice mixes. Sauces. Salad Dressing. Croutons of course. Gluten is EVERYWHERE and you MUST read labels, call companies or ask in here to see if something is gluten-free if you are uncertain. CC can also be from residue on the grill from previous gluten grillings. Scratched Teflon pans can harbor gluten. You need new cutting boards, wooden spoons and scratched plastic for the kitchen. A new toaster/toaster oven.

Need to make sure his toothpaste, shaving cream, chapstick, etc. is gluten free. Anything that can get into the mouth.

No Wheat, Barley, Rye or Oats (or their derivatives).

I know at first it is all overwhelming, and no one wants to do it. But if he is Celiac, this is the cure.

Also if you eat gluten and then kiss him (french kiss) he can get contaminated that way too.

[Jenny (AZ via TX)]

Mandy,

I felt really great the first week or two and then felt horrible. I'm just starting to feel better and do not really have the pain anymore. I was tested in Feb and dx'd in March. I went gluten-free right away, at least I thought I did. After looking at all of my supplements I noticed that one of them had oats in it.

A good book to get which explains things very simply is "Living Gluten Free for Dummies". This book was a godsend for me. Also, there is so much info on this forum and the search feature is pretty easy to use.

I feel so bad for your husband and also for you. It's so hard when you are not sure what the diagnosis is. If he is celiac or gluten intolerant, it may take some time for the villi to heal. I still don't feel normal yet and it's been about 6 months.

Every person is different in the amount of time it takes to heal.

[Juliebove]

Steak is hard to digest. So is salad. I have gastroparesis which is nerve damage to the stomach. I can not eat any steak at all or it will come back up. Have to be careful with salad. Can eat a small amount.

He should probably be eating easy to digest foods. Rice pasta with tomato sauce, chicken breast, turkey breast, ground beef, potatoes with no skin, applesauce, canned pears, bananas, canned green beans, rice bread, cooked rice, Rice Chex (make sure they say gluten free). homemade soups, etc. He might do best to have mainly liquids until his stomach settles. Things like tomato juice, fruit juice, broth, regular soda.

He might also be getting gluten in things you don't realize have it in there. Or through cross contamination.

My daughter no longer has gluten issues but still has an allergy to wheat. But when she was diagnosed with the gluten allergy, I went through the kitchen and got rid of all gluten containing foods. Everything! No wheat flour, cereals, canned soups, pasta, sauces, etc. That way I wouldn't accidentally gluten her. But I still did. With things like Rice Dream. It says it is gluten free, but they use barley to process the rice and it does contain trace amounts of gluten. Or Mentos. Made with glucose syrup derived from wheat. Or the candy from the health food store. The celiac store owner said it was safe, but it was sweetened with barley sweetener.

[Mandy1020]

Thanks for all the advice, I will talk this over with him tonight. He had a very rough last 2 days, to the point where he thinks he needs to check himself into the emergency room (although he won't because it's our daughters birthday this weekend and he dosn't want to ruin it). I want him to go because he is in so much pain, but I can't force him to do anything.

He has been very sick for the last 4 days. We need to figure out if it may be something else or if it is glutten related, like maybe he got gluttened and we didn't realize it. So my question now, is when a person accidentally gets gluttened, how long do the symptoms normally last. Are you normally just sick for a day, or do the symptoms go on for a few days? Any feedback is greatly appreciated!

[Guhlia]

I am one of the lucky ones in that my pain is relatively short lived and the symptoms only last a few days after being glutened. There are many though that suffer for weeks after a glutening. You've gotten some great advice so far. The only thing I would add is that perhaps he should refrain from eating dairy as well. The lactose receptors are one of the first things damaged with Celiac.

[ang1e0251]

Great advice. I also agree w/very simple foods for awhile and please no milk or lactose at all. Spices especially blends and packages are notorious for having hidden gluten. The tests will never show positive if he's not eating gluten.

Each person has different times of recovery from a glutening. Sometimes I'm better w/in 24 hours sometimes it's more like a week. I've read posters say they are sick for a month. Be patient, eat gluten if you are testing, and give it time. Be careful of CC and simplify his foods for a few months. Simple whole spices, fresh whole foods and easy to digest meats. He needs to heal. He didn't get this sick overnight and it will probably take awhile to heal all that damage.

We're here for you.

[debmidge]

Mandy1020, on Oct 15 2008, 10:26 AM, said:

My husband has been sick for the last year or so, but it has gotten increasingly worse over the last 5 months. He has lost almost 80 pounds and he looks so sick, it breaks my heart. About a week ago his friend mentioned that maybe he was allergic to glutten. So I have been researching and alot of the symptoms match what he is feeling. We took him to the doctor to get blood work and a referral for a biopsy. The next day we started him on a glutten free diet, and he started to feel better. He said the first 2-3 days he felt alot better, but then he got sick again. 3 days ago we had steak and salad for dinner and he threw it all up. Since then he has felt nauseous and he feels like he has a flu and was throwing up yesterday. At this point I don't know what to do, I am so worried about him. I thought that once he was on a glutten free diet he would feel better, is it normal for him to be so sick again? We can't get him in for biopsy for a month, so in the meantime I am worried sick. The symptoms match celiac disease, but could this be something else? I am worried that he is not getting the nutrition needed because he can't eat anything?

Is it normal to keep getting sick and feel so bad after starting the glutten free diet?

Hi
Does he have a definite diagnosis of celiac or wheat allergy or gluten/wheat intolerance?
What other tests did doctor run? Does husband have any diarrhea or constipation? Any abdominal pain?
I'd also consider ulcer, liver disease, gallbladder disease, digestive malignancies, hepatitis, abdominal blockage, appenditis - so many other conditions to consider. Did Dr. check for Jaundice?


Good idea for him to eat things which are easy to digest - as other posters suggested. For instance, my husband went 27 years misdiagnosed and due to long-lasting celiac issues he lost the ability to digest fruits, vegetables, nuts/seeds, spices, fried foods, foods, greasy foods, acidy foods, and eggs to name several issues. But he never threw up; may have felt like it over the years.

Please Keep us informed
about his progress...
D.

[GLPIII]

Mandy - Did you get the results of the biospy back? If it is Celiac disease i hope your man begins feeling better and soon, but be ready for his recovery to take a longer time than you might expect. Yes - there can be ups and downs. Good days and bad. It all depends on how much damage was done to the cilia, his age, stress level - all these factors can influence recovery time. And here's the frustrating thing Amy and I discovered when she was diagnosed - she doesn't just have to watch gluten now - she has lost the ability to digest lactose/dairy now too. Because of the damage to her intestine, until she recovers, she can't digest dairy, and she may never be able to again. dairy is one of the first things to go when you become celiac.

so currently - she's still recovering and if she has gluten, we all know that's a bad thing. but if she has dairy - she's in just as much pain too.

So watch what you guys eat. complex carbohydrates and proteins (like steak) may be too hard for him to break down easily right now. He might have to stick with simpler foods for a while as he heals.

Just be supportive of him, and stand by his side. With your love to inspire him, and a strict gluten free diet, he'll start to feel better in time.

[ToddZ]

Mandy1020, on Oct 15 2008, 11:26 AM, said:

My husband has been sick for the last year or so, but it has gotten increasingly worse over the last 5 months. He has lost almost 80 pounds and he looks so sick, it breaks my heart. About a week ago his friend mentioned that maybe he was allergic to glutten. So I have been researching and alot of the symptoms match what he is feeling. We took him to the doctor to get blood work and a referral for a biopsy. The next day we started him on a glutten free diet, and he started to feel better. He said the first 2-3 days he felt alot better, but then he got sick again. 3 days ago we had steak and salad for dinner and he threw it all up. Since then he has felt nauseous and he feels like he has a flu and was throwing up yesterday. At this point I don't know what to do, I am so worried about him. I thought that once he was on a glutten free diet he would feel better, is it normal for him to be so sick again? We can't get him in for biopsy for a month, so in the meantime I am worried sick. The symptoms match celiac disease, but could this be something else? I am worried that he is not getting the nutrition needed because he can't eat anything?

Is it normal to keep getting sick and feel so bad after starting the glutten free diet?

I was sick over a year and could not eat solid food. I lived off Ensure vanilla shakes for almost the entire time. I was drinking 3 or 4 a day of the high calorie type to make sure I was getting proper nutrition. I had one ear nose and throat doc tell me the "all in my head" bullcrap which of course is not true. My gastro doc helped as best as he could. Doing it this way will eliminate irritating food and hopefully will help him start recovering if it's gluten related.

[SGWhiskers]

Mandy,
Has your husband had the blood test for Celiac? That can be done in a matter of days. You won't have to wait a month to have some answers. If that comes back positive, you can choose to go straight to the Celiac diet or have him keep eating gluten and have the biopsy. I chose the biopsy so I could see how much damage was done (and look for complications). If the blood work comes back negative, his doctor can start investigating other possibilities without wasting time waiting for the biopsy. Still try and get that endoscopy done so they can look for Celiac or other kinds of damage. I hope your husband is feeling better swiftly. By the way, he needs to be regularly eating gluten when he has that blood test. If it were me, and I were feeling bad enough to want to go to the emergency room, I would insist on a doctor's appointment and blood test within 36 hours.

Good luck finding the cause. I hope it is as simple as going gluten free.

SGWhiskers

[Mtndog]

Welcome to the board. Your husband sounds so much like me- I lost 80 pounds and was constantly nauseous and vomiting. It took awhile for my intestines to heal.

There is a lot of good advice on this board. One thing that I think helped my gut to heal was a supplement called Intestinew (i got it at a local health food store). Also, lots of probiotics.

I hope he starts to feel better soon!