BlessedMommy

  On 7/23/2014 at 6:35 PM, IrishHeart said:

 

I do not see how you can cause yourself damage. As long as it's not gluten, there's no damage going on. 

I agree! To my knowledge, there's no way for veggies to damage the villi. 

I would be very leery of cutting out healthy foods for vague unproven reasons. You need variety in your diet and you need the nutrients in a variety of foods. 

When I was breastfeeding my first baby, somebody claimed that chocolate would make my baby scream and so I should cut it out of my diet. Well, I didn't because that wasn't an issue for me! I think that a lot of the restrictions that people try to impose on breastfeeding moms just make breastfeeding seem needlessly hard.

Same with celiac, I would be very suspicious of any doctor who starts telling me to cut out foods left and right without hard evidence. Being gluten free is hard enough as is.

Yes, millet is very cost effective!

My bulk supplier can get me 25 pounds of organic certified gluten free millet for around $37. Compared to the price of gluten-free oatmeal and other grains, that's pretty cheap!

I make mine with certified gluten free oats and whatever other configuration of ingredients I have on hand. Sometimes I put garbanzo beans in them, sometimes eggs, sometimes cashews. Often flax seed, for the extra omega 3. 

Just a general reminder for any newbies reading this thread, be sure to buy a new waffle iron after DX. Waffle irons are very, very difficult to clean thoroughly if they've been used on gluten waffles.

I think that making more rules for what food to eats only makes things unnecessarily difficult.

I would say that the best rule is to eat simple whole food meals and to take note if something bothers you. If something doesn't bother you, I don't see why it would need to be eliminated. 

I would get him the complete panel. The Ttg test misses a number of celiacs.

If the doctor won't order the complete panel, I would either switch doctors or order the tests from a private lab and self pay. 

I like white rice too! My favorite types are basmati and jasmine.

I'm glad that your primary care doctor is on board!

I agree that lots of recipes can be modified easily to be gluten free with only minor tweaks.

One of my favorite cookbooks isn't a gluten free cookbook at all, but it has been very useful to me.

I think that if you are unsure, adding gluten back in could help to put together the puzzle a little better.

My #1 advice on gluten challenges is not to overdo the gluten. One sandwich per day is plenty. 

If you have a positive biopsy and symptom resolution, than it's likely that it's celiac. You may be one of the few celiacs who test negative on the blood panel and if that's the case, I doubt that gluten challenging would make a difference.

However, I have seen a suggestion of using 4/5 factors to DX celiac:

1) symptoms of celiac

2) resolution of celiac symptoms on a gluten free diet

3) positive bloodwork

4) genes for celiac

5) positive biopsy

I think that it's wise to use a combination of factors, considering the possibility of false negatives.

It sounds like you have 3 out of those 5 already. If you want to be extra sure, you could do the genetic test. 

ETA: I'm sorry I just saw your comment about your biopsy being inconclusive. Does your doctor have any suggestion for other causes of the intestinal damage?

Unfortunately we are all so different in what we tolerate, that it would be difficult to make any uniform suggestions. I'm sorry that you're having trouble with certain foods.

That does sound hard, dairy free, gluten free, and nut free. I'll bet that meats, fruits, veggies, and rice are some of your best allies.

The stuff in Canada does sound expensive! And the Canadian dollar and US dollar are pretty similar in value these days right?

In our area, you can get a house in good condition with a few acres of land for $80,000 or so. We live in Michigan.

Why a gluten challenge? Do they want to redo the endoscopy? (sorry if you mentioned that already and I missed it!)

It sounds like it could be a possibility for you.

Have you asked your doctor about bloodwork to test for it? There's no need to worry about doing an elimination diet unless you've exhausted all testing options and still have inconclusive results.

I had to laugh at your comment about your non-existent cat. LOL!

Does your doctor really think that you'd get a rash from a cat if you didn't have one?

It is up to you whether or not to get a biopsy.

Some people on here have done them a month or two after going gluten free and got positives--after all the damage doesn't heal overnight. But definitely the sooner the better!

I'm so sorry that you're having to go through all this. 

OP, if you think that you're going to want to get an endoscopy done, I would schedule one ASAP.

After you've been on the gluten free diet for awhile, it usually takes a gluten challenge in order to get accurate results and that's generally the last thing that a newly dx'ed person would want to do, especially if they are improving on the gluten-free diet. 

ETA: Looks like kareng and I posted at the same time.

Oh okay, I see. 

Have they tested for and ruled out other conditions such as Crohn's?

I hope that you find answers soon!

I'm curious, did you have him initially tested because of family history if he had no symptoms?

I found Enjoy Life chocolate chips in a bulk bag online (5 lb) but ironically the bulk bag doesn't save any money at all. They cost me $4.99 per 10 oz bag at the store and this bag is $39.99 for 5 pounds, which equals around the same unit price.

Do you have to buy only stuff made in nut free facilities?

I'm sorry that you're still having issues, that has got to be hard!

As far as the diagnosis stuff, I think that you are most likely celiac. You have a daughter with celiac and you have severe symptoms when you consume gluten. 15 years of being gluten light is a long time and I'm guessing that the gluten challenge probably wasn't long enough and that the celiac tests were false negatives.

It is probably wise though to rule out any other issues, so it doesn't hurt to keep on looking at other possibilities.

The great thing is that after investing in all those dedicated gluten free utensils/dishes, you can reuse them in the future and make your friend more stuff.

I like Enjoy Life, but they are so expensive.

Yeah, my GFS has the 4 lb bag. They are a lot cheaper than Enjoy Life chocolate chips.

I need to find out what implements are available.