Son Newly Diagnosed

[Karbol]

Hi, I am a new member - a Mom with a 36 yr old son newoly diagnosed only 1 mo ago. I am so scared for him. he has lost so much weight and his coloring is a pale, ash color. My hustban and I feel helpless as to how to support him. Before this our son was an avid soccor player, cyclist, and softball player. It is soooo strange to see him in pain and struggling with a new diet that doesn't seem to be helping at all. We feel so frustrated and scared for him. His wife and 3 children look at us with a "deer in the head-lights" look, as they are trying to adjust to husband and dad that is so different from before. When can we expect this to get better. He is now on prednisone for healing and a new drug called 6mp. Anyone ever heard of 6mp? We want to be able to make a difference for him and his family but don't know how. Karbol

[jerseyangel]

Hi and welcome

Does your son have any other issues that would make the 6mp necessary? For Celiac alone, it seems like a pretty potent drug to be on, with no real benefit. (just my own opinion)

Celiac is an autoimmune disease, with no cure--only treatment with the gluten-free diet at the present time.

If he's dealing with "only" Celiac, I'm wondering why they aren't simply putting him on the diet and explaining that it needs to be followed 100%. The diet, along with nutritional suppliments (if necessary) is usually quite successful--once the learning curve is figured out and the intestine has a chance to heal some.

Sorry if I've missed something, I hope that everything works out for him.

[Karbol]

Hi and welcome

Does your son have any other issues that would make the 6mp necessary? For Celiac alone, it seems like a pretty potent drug to be on, with no real benefit. (just my own opinion)

Celiac is an autoimmune disease, with no cure--only treatment with the gluten-free diet at the present time.

If he's dealing with "only" Celiac, I'm wondering why they aren't simply putting him on the diet and explaining that it needs to be followed 100%. The diet, along with nutritional suppliments (if necessary) is usually quite successful--once the learning curve is figured out and the intestine has a chance to heal some.

Sorry if I've missed something, I hope that everything works out for him.

[Guest j_mommy]

Hello!!!!

Are you sure prednisone and 6mp are gluten free?????(Call manufactorer and let pharmasist now you can't have gluten in your prescriptions!!!)

I would also wonder if he is getting cross contaminated??? Possible from using teh same toaster or cookware that has scratches?????

Some people do take awhile to feel better. I saw some improvement with in a week of going gluten-free. THe gluten-free(gluten free) Diet is the only thing that will treat celiac....and it needs to 100% followed.

hopefully you guys can get this figured out!

[Karbol]

Thanks for the replies. I didn't clarify very well, did I? My son was also diagnosed with Inflammatory Bowl Disease because he has been in sooo much pain. He's been in the hospital 3 times in the past month, always coming home with the pain still intact. He started his diet immediately. I'm scared beause it doesn't seem to help. Why? Everyone of you say that it can only be controlled with the diet. What about the pain? I guess it is all the Inflammatory Bowl Disease? I don't know how he stands living with this every day.

[jerseyangel]

Wow, he's really dealing with a lot. IBD as well as Celiac. As far as the Celiac goes, some people do get pain as a symptom. How quickly it begins to subside after going gluten-free is pretty individual. I had stomach pain that felt like I got kicked in the stomach, along with nausea, and lower cramping due to the D.

The D began to ease within days of going on the diet, but the rest of my symptoms took longer--I would say it was 4 months before I can say I "turned a corner". I also had additional food intolerances and neuro symptoms that delayed my recovery even more.

All in all, it took me about 18 months to feel better. For some, it's more immediate, and for others, it takes even longer. That depends on a lot of things like how long the damage to the intestine has been happening.

With the diet, he wants to make sure to check any vitamins, medications, and personal care products for gluten. This includes chapstick and his wife's lip products.

In the kitchen, his toaster, collander, and any wooden boards and utensils need to be kept separate. Non stick cookware is fine as long as there are no gluten-harboring scratches. Glass, ceramic and stainless steel are fine, also.

If the rest of the family eats gluten at home, his foods must be kept separate--one crumb will induce a reaction. The same goes for "dipables" like margarine tubs and jelly. It's safest to keep those separate, too, to avoid contamination.

In the beginning, it's a good idea to be dairy free as well. The damaged villi can't properly digest it. Maybe eat just whole, natural foods, as opposed to processed.

I don't know how long he's been gluten-free, but sometimes people who are intolerant to gluten can be intolerant to other foods as well. Soy, corn and dairy can all cause problems.

I can imagine how hard it is for you to see your son going through this (I have 2 sons, 26 and 22). I'm glad I'm the one going through this and not one of them. Anything we can do for you, just ask.

[Cody S]

Thanks for the replies. I didn't clarify very well, did I? My son was also diagnosed with Inflammatory Bowl Disease because he has been in sooo much pain. He's been in the hospital 3 times in the past month, always coming home with the pain still intact. He started his diet immediately. I'm scared beause it doesn't seem to help. Why? Everyone of you say that it can only be controlled with the diet. What about the pain? I guess it is all the Inflammatory Bowl Disease? I don't know how he stands living with this every day.

He will not live with the pain every day. Celiac's presents different symptoms in everyone, but there is one underlying symptom that is consistent and that is the damage of the villi and the walls of the small intestine causing hyperpermiabilty. I know of celiacs who feel this very acutely and some do not even feel the damage that is being done. Being that your son has aquired this disease late in his life means that he could have been causing serious damage to this small intestine for an extend period of time without even knowing it. While a gluten-free diet is the treatment it does not always mean that the pain of a damaged small intestine will immediately cease. Damage has been done and the body needs to heal and this takes time. Fortunately the small intestine heals at a very rapid rate so (cross your fingers) he should improve.

To backup every other poster to this the gluten-free diet must be 100% maintained and glueten hides in several products that you'd never suspect; ketchup, vinegar, oats, soy sauce, shampoos, and yes in some medications.

Maintain this gluten-free diet as diligently as possible as this is at present the only road to recovery.

[NoGluGirl]

Dear Karbol,

I have a list that should really help. This is overwhelming. I went through this with myself eleven months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

[gfpaperdoll]

Here is what I think:

100% gluten free with no issues of cross contamination

100% dairy free

NO GRAINS - except for some rice & maybe later some corn

NO processed Foods

NO soy

Make a soup with a organic chicken that you boil & add some carrots & cabbage & cook it all up - do not add anything else. This is dinner, after a couple of days if this goes down okay, you could serve over some cooked white rice, that you cook from a bag of rice, & you wash the rice in several rinse waters before cooking it.

for breakfast it is cooked apples, or other fruit that he tolerates, maybe some baked chicken, scrambled egg with nothing in it except maybe a sprinkling of salt, or boiled egg

lunch baked sweet potato and a protein, baked or boiled or a scrambled egg etc.

Make this the start out diet & see how he does then SLOWLY he can add other whole foods - this means fruits, cooked veggies, meats, nuts - fresh & organic if possible,

he needs to eat "soft" foods not things like corn chips... This is not forever it is just to get him started on a good eating plan

I am sure your son will be better soon, sounds like he might need a whole gluten free house, but that can come later, his wife & kids will get over the shock, it is a shock to think that wheat & dairy can kill you - but it can...

[corinne]

I also have a type of inflammatory bowel disease so maybe some this can help.

6-mp and prednisone are taken to for inflammatory bowel disease not for celiac. These drugs are both immunosuppressants and are very strong. It is hoped by taking these powerful drugs that the IBD can be brought under control. Then, drugs such as asacol are usually taken to prevent flare-ups of IBD.

Having both celiac disease and IBD takes a real toll on the digestive system and subsequently on energy. IBD can cause significant pain. Diet, for some people, has no effect on IBD so even if the celiac disease is under control, there can be continuing pain, fatigue, diarrhea etc. from the IBD. For some people eliminating dairy, high fiber foods including seeds+nuts or cruciferous veggies such as cabbage can relieve symptoms of IBD.

This board is great for getting the celiac part of things figured out and the Crohn's and Colitis Foundation of America is helpful for figuring out the IBD side of things. IBD has its ups and downs, but as your son heals from celiac disease, things will likely improve. PM me if you have questions.

[jacqui]

Hi, I am a new member - a Mom with a 36 yr old son newoly diagnosed only 1 mo ago. I am so scared for him. he has lost so much weight and his coloring is a pale, ash color. My hustban and I feel helpless as to how to support him. Before this our son was an avid soccor player, cyclist, and softball player. It is soooo strange to see him in pain and struggling with a new diet that doesn't seem to be helping at all. We feel so frustrated and scared for him. His wife and 3 children look at us with a "deer in the head-lights" look, as they are trying to adjust to husband and dad that is so different from before. When can we expect this to get better. He is now on prednisone for healing and a new drug called 6mp. Anyone ever heard of 6mp? We want to be able to make a difference for him and his family but don't know how. Karbol

BRAVO!!! A family member that wants to learn and help. You have no idea how great it was to read your note. I know you hate to see him this way but in do time he will improve. At least everyone that I have read about or met all improve sometimes it takes a couple weeks to a couple years but at least their is a light at the end of the tunnel.

My in-laws want nothing to do with it and do not understand why they cnnot give my daughter a burger bun every months or so. As for me they think it is in my head.

My Mom either gave me the gene for Celaic or gluten sensitivity an my Dad the other, but both sides of the family say they do not have it. I guess no one wants to say it is "their fault". Which I have never felt it was anyones fault it is just genetics and I just want everyone to find out if they have it or if they have the gene so they can take care of it and start healing.

My sister denied she had any symptoms yet when she finally was tested 10 months later she was anemic, osteporosis (35 y/o), vit. defieciences... Now she realizes she did have symptoms after all and she feels much better being Gluten free.

Good luck and hang in there!!

Jacqui