Newbie Needs Help !

[Don in Dallas]

Good day to you! I will try to be brief. Age: 64 Sex: Male........Generally in good health, diagnosed with prostate cancer in 2004 but cancer free since that time. Just diagnosed with celiac's. In mid December 09' thought I had a stomach virus. Throwing up and diarrhea. The nausea with away after a day of so, but have had the diarrhea since.....Have lost about 20 lbs. A week or so ago,went in for an endoscopy. Last week, Doctor diagnosed me with ciliac disease. Honestly, I had never heard of it before that time. I have been on a gluten free diet for the last 5 days and cannot tell any difference yet. Question: how long would you think it should take to make a difference? Also, I have had the nausea symptoms twice since the onset in Dec. Question: Have any of you had the nausea symptoms. It is horrible when it hits, both the nausea and diarrhea at the same time. It was almost a blessing to have been diagnosed with something that seems relatively easy to control (or am I being too optimistic? It is great to find this web site and outlet for gluten free products. I look forward to communicating with you.

Don from Dallas

[psawyer]

Welcome, Don.

Nausea and vomiting was very much a part of my symptoms. For me, the ultimate celiac experience was sitting on the toilet with painful explosive diarrhea whilst simultaneously vomiting into a bucket. I can relate.

Time to heal varies greatly from person to person, but it is usually measured in months. I began to experience a reduction in severity of my symptoms quickly, but it was at least two months before they were gone.

[Lz-erk]

Greetings.

I was convinced after only about two weeks on my gluten free diet, but my symptoms at that point were uncommon, mostly derm and neuro. I've heard it can be a slow process, and questions on the time and capability for recovery from various levels of damage have arisen.

On the slightly brighter side, there are things you can do to speed the process along. The most helpful link I found was this:

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

Any ingredient listed on a product that contains or may contain gluten is too much. The problematic items for me included caramel coloring [in my experience, that ALWAYS means gluten] and everything involving the word "starch" without specifying what sort of starch specifically; this is particularly disappointing with prescription medications due to the jumbled systems that dispense them, and also concerning in OTC medications and vitamins -- anything labeled a "dietary supplement" may have different rules from food.

I recommend coping with that to find specifically marked gluten free supplements for vitamin C, at the least. It worked miracles on my mental and physical fatigue and overall feeling of my state of health. What I consider an effective dose of vitamin C is probably a bad idea for someone with digestive problems, as large doses can cause diarrhea, but you should be safe for at least one gram a day, and I'd personally push the amount if it seems either helpful or harmless. I'm mentioning this because I STOPPED getting better after a few months, and saw no progress until I picked up v.C megadosing. To my knowledge, vitamin C supplementation could reasonably be more important for those with GI manifestations.

For comparison, healthy controls often reach bowel tolerance at four or more grams per day. I could take up to fifteen grams when I began vitamin C megadosing, which is not very abnormal for a moderately unhealthy person, and now [maybe 18 months from gluten-free diet] I'm down to about 3 or 5. One of my gluten intolerant relatives who has digestive problems can take only one total gram of vitamin C a day without incurring bad diarrhea and other problems; she and I both recommend "Ester C."

[Notice: orthomolecular medicine is officially worth as much as magic beans and voodoo, but I had nothing to lose from it, so I tried it once.]

Anyway, the complete elimination of gluten from your diet is the highest priority. Although I identify myself as the gluten bloodhound of the family, and hopefully others are not as sensitive to it, it should help to be thorough. Setbacks were very visible to me, and each cost me easily up to a week of progress or time, in terms of healing, health, physical/mental competence...

The worst setbacks were nothing more than the combination of hunger and "brain fog." I had to establish a routine of ALWAYS checking a product's ingredients, double-checking so as to never use unwashed cookware that was used to cook gluten foods, and never dining out.

It's unfortunate when fatigue, malabsorption, brain fog, pain, and all the "normal" elements of life combine to take away time and energy to prepare all of one's own meals, but I would not eat at any restaurant that doesn't have a gluten free menu section. Even then, note that caramel coloring is common in soy sauce and soft drinks, starch in mustard packets, and so on.

I hope your doctor has given thought to antiemetics and antidiarrheals... I don't have experience with those symptoms and can't think of anything to help with them beyond OTC products -- and with GI symptoms, I'd be cautious with many of those, although relatives recommend Pepto Bismol and Benadryl.

Good luck and get better soon.

[Don in Dallas]

Welcome, Don.

Nausea and vomiting was very much a part of my symptoms. For me, the ultimate celiac experience was sitting on the toilet with painful explosive diarrhea whilst simultaneously vomiting into a bucket. I can relate.

Time to heal varies greatly from person to person, but it is usually measured in months. I began to experience a reduction in severity of my symptoms quickly, but it was at least two months before they were gone.

Peter......Thank you so much for your quick reply. Something else that has come to mind since my diagnosis, is that 30 years ago I was diagnosed with "chronic hives" The doctors said it was most probably a food alergy but could never narrow it down exactly. I have taken various antihistamines daily since that time. If I were to miss a day, my hands (most generally) would breakout with uncontrollable itching. Very painful, as you can imagine. Do you think this might have been celiac's in the early stages? Past the hives, I really had no other symptoms like I have had lately however. Thanks in advance for your reply.........Don in Dallas

[psawyer]

Dermatitis Herpetiformis is the skin form of celiac disease. It causes a rash that itches intensely. I doubt that a health care professional would confuse it with hives--they have a very different appearance. DH resembles eczema (which I had as a child). DH does not respond to antihistamines, but steroids may help.

Hives are an allergic reaction. Celiac disease is an autoimmune reaction. They may share the same trigger, but they are quite different. It is possible to be allergic to wheat while also having celiac disease--the two conditions are independent.

If you have had celiac disease for thirty years, it is likely to take a long time for your intestines to heal. Stick absolutely to the diet and hang in there. It will get better.

[GFinDC]

Hi Don,

I suggest you stick with a whole foods diet to start out. Also avoid soy and dairy. You will see this advice often on the forum, for a simple reason, it works. Avoiding processed, packaged foods means you don't have to spend lots of time reading labels and wondering if the ingredients are safe. The label on a bag of potatoes usually says "ingredients potatoes." That is the kind of ingredient label you want to go with, 1 or 2 ingredients that are simple obvious things. Like bags of frozen veggies with salt and water added would be ok. Eating lots of rice and veggies and meat meals would be a help at first. There are simple meals to make and safe. You should probably wait on trying all the gluten free goodies until you have given your system a chance to settle into the diet.

Try a search on cross contamination or cc here and you will find some info on it. Basically you need to avoid any tiny amount of gluten as it doesn't take much to set off a reaction by the immune system.

You doc should test your vitamin levels as we sometimes have vitamin deficiencies.

It takes a while to learn the do's and don't of the diet, and everyone is a little different. Some of us have additional intolerances beyond wheat, rye, barley and oats also. So if you don't feel better after a month or 2 then you would want to investigate additional food intolerances.

Welcome to our world and happy gluten-free eating! It does get easier after a while, although the start can be a little daunting.

[jackay]

Greetings.

[Notice: orthomolecular medicine is officially worth as much as magic beans and voodoo, but I had nothing to lose from it, so I tried it once.L

Lz-erk,

What is orthomolecular medicine? I have taken some supplements by OrthoMolecular Products and am wondering if they are O.K.