Scientific American Article - Aug 2009 Issue

[balmerhon]

Well, according to the endoscopy, he does not have celiac. He has allergy cells present though. So now we have to start food elimination while we wait to see the allergist.

JoAnn, we have AI in my family, too. My Dad died from complications due to scleroderma. We've got other diseases as well. So even though we were told no celiac, I'm still very aware of AI issues. I hope Dr Fasano has a lot of success.

We're going to try eliminating milk first. Which, frankly, is almost as much fun as eliminating gluten. Which was hard. Yes, we have a Trader Joes but he won't eat mexican food. Or mac and cheese. And gluten free pizza got the thumbs down. But now I'll just focus on milk-free foods!

Caryn

[ravenwoodglass]

Well, according to the endoscopy, he does not have celiac. He has allergy cells present though. So now we have to start food elimination while we wait to see the allergist.

JoAnn, we have AI in my family, too. My Dad died from complications due to scleroderma. We've got other diseases as well. So even though we were told no celiac, I'm still very aware of AI issues. I hope Dr Fasano has a lot of success.

We're going to try eliminating milk first. Which, frankly, is almost as much fun as eliminating gluten. Which was hard. Yes, we have a Trader Joes but he won't eat mexican food. Or mac and cheese. And gluten free pizza got the thumbs down. But now I'll just focus on milk-free foods!

Caryn

You need to be aware that false negatives for celiac are quite common in young children. I know the diet was hard but 2 weeks is not long enough to know whether it is effective or not. Gluten can be an addictive substance and 2 weeks is barely long enough to get through the withdrawl. That addiction in itself can make for a fussy eater. When my DS was young after he got his first taste of pasta he refused to eat a meal that didn't have it. His ped said it was okay to give it to him every meal and not to worry. Meanwhile the child went from the 65th percentile to the -10 where he would remain. Oh how I wish I had known what I know now, my son's life would have been so different. There are many 'normal' meals that are gluten free, stews and soups, eggs and well the list is long. I am glad you are going to be seeing an allergist just make sure he can guide you with an elimination diet. Although the elimination diet is going to be IMHO much harder than doing a couple months on the gluten and casien (milk) free diet will be. If you are just dropping dairy for now please be aware that many dairy replacements still have casien so be sure to look for it on labels.

[balmerhon]

You need to be aware that false negatives for celiac are quite common in young children. I know the diet was hard but 2 weeks is not long enough to know whether it is effective or not. Gluten can be an addictive substance and 2 weeks is barely long enough to get through the withdrawl. That addiction in itself can make for a fussy eater. When my DS was young after he got his first taste of pasta he refused to eat a meal that didn't have it. His ped said it was okay to give it to him every meal and not to worry. Meanwhile the child went from the 65th percentile to the -10 where he would remain. Oh how I wish I had known what I know now, my son's life would have been so different. There are many 'normal' meals that are gluten free, stews and soups, eggs and well the list is long. I am glad you are going to be seeing an allergist just make sure he can guide you with an elimination diet. Although the elimination diet is going to be IMHO much harder than doing a couple months on the gluten and casien (milk) free diet will be. If you are just dropping dairy for now please be aware that many dairy replacements still have casien so be sure to look for it on labels.

I am aware that false negatives are a problem for young children. How is an elimination diet more difficult than going gluten and/or dairy free? We've been advised to go milk free. Fortunately, many of the foods DS eats are already milk free. We seem to be lucky in that a lot of the breads/crackers he likes don't have it. DS does not LOVE any food except fruit.

TBH, I'm a bit overwhelmed by it all. And I think this thread has digressed enough! Thanks for the input. I'm sure I'll be posting more later!

[ravenwoodglass]

How is an elimination diet more difficult than going gluten and/or dairy free?

A true doctor defined elimination diet starts with only 5 baseline foods which are eaten for about 2 weeks to a month and then foods are added in one at a time for a week each in pure form to check for a reaction. The 5 starting foods are normally stuff that people don't eat on a regular basis. In the beginning stages of the elimination none of the foods most likely to cause a reaction are allowed. My allergist stated that most do an elimination diet backwards by trying to eliminate one food group at a time. As he said you are not eliminating the food you are eliminating the reaction so all foods consumed need to be in pure form with no seasoning and no beverages other than water unless they were on the starting list. It can be a long process.

[balmerhon]

FWIW, I spoke to the dept about false negatives in young children. They agree that this is certainly a problem. That said, this is Dr Fasano's dept. If any place is going to get it right, it's going to be them. Of course, that doesn't rule out intolerance or an allergy to gluten. But at this stage, I do have to put my trust in one of the best depts in the world for Celiac and (happily) take the negative diagnosis. At least while we explore the allergy angle.

Just out of curiosity - is there any data on false negatives for either adults or children?

[nasalady]

FWIW, I spoke to the dept about false negatives in young children. They agree that this is certainly a problem. That said, this is Dr Fasano's dept. If any place is going to get it right, it's going to be them. Of course, that doesn't rule out intolerance or an allergy to gluten. But at this stage, I do have to put my trust in one of the best depts in the world for Celiac and (happily) take the negative diagnosis. At least while we explore the allergy angle.

Just out of curiosity - is there any data on false negatives for either adults or children?

I don't know about statistics on the number of false negatives; I am very interested in that info too!

I can only offer my family's experiences. My granddaughter Carly first tested negative for celiac in both blood work and biopsy when she was 2 years old. She was very thin (dx Failure to Thrive), with GERD, vomiting, diarrhea, etc....all of the classic symptoms. Her doctor didn't give up though. She did a second biopsy a year later and it was positive. But in the meantime poor Carly had just wasted away to skin and bones....the good news is that the gluten free diet has changed her life! She is very healthy now and is actually starting to catch up to her peers on the height-weight charts!

My (adoptive daughter/biological granddaughter) Emma is 3; she also tested negative for celiac when she had the bloodwork done, so her GI doc decided not to do the biopsy, even though Emma has one of the primary celiac gene markers. Emma is also a Failure-to-Thrive baby, way below the curve on height and weight (she still wears size 12 month clothing). I put her on the gluten free diet anyway after I found out I had celiac disease, and her eczema has disappeared, her keratosis pilaris is significantly improved and she is suddenly gaining weight!

So what do those two examples say about false negatives in children?? Of course Emma could be non-celiac gluten intolerant (NCGI), but given my family history, I seriously doubt it.

I actually believe that all of my blood relatives need to be on a gluten free diet regardless of test results simply because of our extraordinary predisposition to developing autoimmune diseases in general and our significant family history of celiac disease in particular. If Dr. Fasano's theory is correct, the gluten free diet may save many of them from serious health problems later in life. I've told all of my adult children that it is imperative for them to be gluten free....two of them (my daughter with lupus and Addison's disease and Carly's mom, my daughter with Hashimoto's thyroiditis) have followed my advice and have experienced an improvement in their overall well-being.

I'm in touch with many of my cousins in other parts of the country, who have reported the same issues in their families: Hashimoto's, lupus, etc. And I've suggested the same thing to them: the gluten free diet. It certainly can't hurt....and it may help a great deal!

According to recent research, the gluten free diet significantly lowered the number of thyroid autoantibodies in people with Hashimoto's and Graves disease:

Open Original Shared Link

From Volta et al, 2001 (Coeliac Disease in Patients with Autoimmune Thyroiditis):

The importance of an early identification of coeliac disease in patients with autoimmune disorders is two-fold since a strict adherence to a gluten-free diet not only helps to prevent the severe complications of untreated gluten-sensitive enteropathy such as ulcerative jejuno-ileitis, intestinal lymphoma and other neoplasms, but can also lead to an improvement of the associated autoimmune disease.

You mentioned multiple AI diseases in your family....what might that say about the likelihood of undiagnosed celiac disease in your family given Dr. Fasano's research?

Well anyway, sorry to be so verbose....of course this is just my two cents.

I do wish you the very best of luck in figuring out what's going on with your son! You're right about that group being one of the best in the world for such an investigation!

JoAnn

[balmerhon]

Thanks for your input, JoAnn. I will certainly bear that in mind as we continue to progress through the diagnostic phase. I'm told that if it's a milk allergy, he should show improvement within 3 weeks. We're going to try that and if there is no improvement, we may try gluten free again down the road - and stick to it for longer than 2 weeks!

I should point out, if you haven't seen my posts in the babies and children section of this forum, that while my son is underweight and has very soft poop, he is thriving in every other way. His height is average, he sleeps well, he has no sign of any GI pain or bloating, etc. His skinniness is also attributed to his father who is very thin.

That is what makes this so frustrating. For every symptom that might be celiac, there is the possibility it may just be allergies.

It's going to be a bit of a long road still, I suspect. We've already been at this for 2 years.

[debmidge]

We cannot wait for this medication to become out to the public. It would be wonderful for my husband, who is 100% gluten-free all the time, to be able to attend a wedding or such, and have a gluten-free meal and not have to worry about possible cross contamination in the kitchen. Or eat gluten-free over someone else's home and not have to worry about possible cross contamination. He is sensitive to the smallest amount of gluten.

To those who aren't interested in this medication, that's fine too. It's a very personal decision and I wouldn't dare try to change your minds.

As to big-pharma..I have relative who works for big-pharma, they make cancer drugs and that particular pharma is really dedicated to helping those who have cancer. I viewed a 15-minute documentary on them showing real patients who were on the road to recovery and I cried my eyes out. The drugs they took really worked and these people came back years later to tell their stories and how grateful they were.

I am overall just as much as a cynic as you all can be, but even on a gluten-free diet there will be times where you just can't control what is at the factory where the food is made, etc. and perhaps a "Plan B" can come to the rescue for some, not all celiacs. We all have margins of error in life.