celiac disease

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Photo_17_medium joannemcbarnes 4 posts

I have been diagnosed with a high risk of celiac disease. I found a book, Feast without Yeast, that gave me a lot of help with diet and helpful recipes. I’ve been able to revise some of my recipes to be gluten free. 

I do miss bread, as I have a sensitivity to yeast!!!

I have a delicious suggestion for a wheat spaghetti substitution: spaghetti squash!!!! It is great with spaghetti sauce or alone. My husband likes it too. Plus it is good for you!!! Give it a try….

 
Icon_missing_medium Autumnwynds 1 post

There are also some great websites for Celiac/allergy sufferers: Karina’s Kitchen and Gluten-Free Cooking School are a couple.  Karina recently developed a bread recipe that’s supposed to be really good.  The recipes I’ve tried from these sites have been awesome.  You should be able to find these and other websites via google.

 
Icon_missing_medium atlhockeymom 1 post

My 17 yr. old daughter was symptomatic for approx. 5 years before receiving a diagnosis of full blown
“Celiac Disease”. She had an upper GI performedwith an intestinal biopsy, labs, and then the DNA test. The DNA test confirmed, without a doubt what we already knew. She was positive for Celiac and so am I. We have now traced it back to my paternal grandmother. A distant cousin’s 17 year old son also has Celiac. I have the other auto-immune diseases under the umbrella: Rheumatoid Arthritis, Sjroegen’s Disease, fibromyalgia, etc….I also test positive on the DNA test for celiac, but mine is dormant at present. We feel very blessed to have a GI specialist smart enough to have diagnosed this very quickly. Even though my daughter had the chronic constipation, bloating, belly aching, and asthma and allergies; her worst symptoms were uncontrollable vomiting. Sometimes she would vomit for 10-12 hours and we would end up in the hospital E.R. just for IV fluids and a drug called Zofran to stop the nausea and vomiting. She also had kidney stones at age 12 due to the disease. It’s a very dangerous disease that needs to be taken seriously. My hope and prayer is that someone will continue to put a lot of research into t and that they will also do more to educated the general public and especially physicians.

After being on the gluten free diet for 10 days my daughter said she felt like “a new person”. She can even dance ballet for 30 minutes without using an asthma inhaler. She’s no longer anemic and her energy levels are at a much healthier level. She doesn’t “look” sick anymore. We are blessed.

 
Bbmemberpicture_medium eadutcher 2 posts

Short Version:  My 15 year old son was misdiagnosed with Celiac two seperate times.  He has a severe allergy to wheat, but what it actually turned out to be was Eosinophilic Esophagitis.  He ended up not only being allergic to Wheat, but to many others and some we are still trying to figure out.  He is on a severe elimination diet that is so overwhelming.  He can NOT have any….Wheat, Soy, Eggs, Cows Milk (protein), Fish, Shellfish, Nuts, Treenuts, Lamb, and Beef.  I just wanted to mention this because if you have been diagnosed with Celiac, and still seem to have symptoms of any type of allergic reaction…I encourage you to seek further testing, or a second opinion.  It took 13 years for my son to be properly diagnosed.  His symptoms were not only Gastric, but Localized in his Esophagus, with swelling and difficulty swallowing.  He also had respiratory symptoms of Shortness of Breath and Wheezing.  Hope this information may help someone still seeking an answer.

 
Photo_17_medium joannemcbarnes 4 posts

What can you feed your son with so many food allergies. God bless you….

 
Bbmemberpicture_medium eadutcher 2 posts

LOL…that is a question I ask myself everyday!  What am I going to feed him today?  Such a difficult question.  He can have any fresh fruit or veggie.  Getting him to eat it is another thing though.  He can have all white meat…turkey, chicken, pork.  He can have venison from any source as far as we know of…but obtaining those is a task in itself.  He can have oats, rice, corn.  So that all helps…but it doesn’t make for the best tasting cakes, bread, ect.  He hasn’t had any type of bread other than corn bread and that is really bothering him.  Noted before being diagnosed he ate everything, so he knows what he is missing now.  Him being 15, it is very challenging for him and wears on him terribly.  He can have starburst candys and skittles.  We just found this out as I had to research the modified food starch issue.  Mostly all of it is now a derived from corn…and if it is from wheat the allergy labling must state that…so that has helped a lot.  He can have cocoa crispies and corn/rice chex.  Basically everything is from fresh, or scratch using his safe ingredients.  I modify every recipe to suit his diet.  What he misses the most though is chocolate.  I have modified a No-Bake Cookie recipe so he can have them.  I am making them almost everyday.  Needless to say, he eats a lot of oatmeal.  Oh…and bacon, lol.  He loves that…Thank the Lord!  It is something.

I worry because I can not fathom him being able to get all of the nutrients he needs from this diet, but to tell you the truth…he is sooo much healthier now, now that he is eating what his body can process and use, and is not in a constant state of allergic reaction.  And with nothing being processed, he is really getting good food.  It just doesn’t seem to be enough.  He is always hungry, or always craving something.  I make a lot of soups and cassaroles for him.  It is a lot of work….but hopefully it will prevent him from ending up with a G-tube…which was predicted by one doctor for him by the age of 18.  We have since moved on to a couple doctors in gastro and allergy in NYC.  Several hours away from us…but also hopefully worth it.  I think the biggest obstacles are his emotional state and my physical during all this.

Well I have rambled way past what I meant to.  Thanx for asking though…it is nice to just be able to vent to someone who actually wants to know, lol.  Thanx for the blessings as well.  :)

 
Photo_17_medium joannemcbarnes 4 posts

WOW…. that is a lot on your plate. Be sure to take care of yourself too. Would some antidepressants help him with frustration? Just a thought. I am not a health professional… so run it by your doctors first!! 

I remember from years ago that there was a substitute for chocolate called carob. I can’t tell you any more than that, but it may be something for you to research.

As far as getting the right nutrients from his diet — what choice do you really have? As long as he is doing so much better he is still healthier than the alternative. Maybe you can check into nutritional suppements, vitamins, minerals, whatever. Also, I know of a 12 year old boy who is taking Humira for Chrone’s disease. It seems to work well for those with autoimmune disorders. 

Thank goodness for OATMEAL!!! It doesn’t work well for me, so I eat a lot of Cream of Rice for breakfast.

God bless you and your family.

Joanne





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