When To Start Gluten Free Diet?

[caligirlmom]

My daughter just recently was diagnosed with Celiac Disease. She is 15 and is very small. We have been seeing an endocrinologist for over a year and she did a blood test at our last visit and came up with the diagnosis.

Before going to the endocrinologist doctor we just kept thinking that all her symptoms were from other problems. We actually waited about 2 years to finally decide that she is really needing to see the endocrinologist specialist. So she has been sort of suffering with various Celiac symptoms for a few years now.

We have a GI doctor appointment coming up now, but I don't want to wait any longer to get her on track for getting healthier. Will it harm her to go ahead and start the gluten free diet now or is it much better to go ahead and see the GI doc and wait another month or two for them to do more tests. How long do you wait before trying something that may help! I'm concerned that we are malnourishing her by not taking action.

Has anyone had any problems by starting the gluten free diet too early and possibly not getting as good of a test result from the GI doctor? Does it really matter? The end result will still end up being to do the gluten free diet.

Thanks!

Caligirlmom

[Fiddle-Faddle]

How soon is the appointment with the doctor? If it's only a few days, I would be inclined to think that a few days won't make significant difference. But if it's several weeks away, then I would call the doctor's office, or even stop in early in the morning, and request to see his nurse. Explain that your daughter has been seriously ill for years, she is suffering, and she already has a positive diagnosis via bloodwork from her primary doctor, and that SHE would like to start a gluten-free diet as soon as possible, so that she can finally begin to feel better.

Therefore, if there are any further tests he would like to order, could he please order them NOW so that your daugher can start on this diet without further suffering?

If they say, no, and that they expect her to continue eating gluten until the appointment, ask if they would tell a peanut-allergic person to keep eating peanuts until they could be seen, especially in the face of obvious reactions and positive bloodwork?

Good luck, and welcome aboard!

[CeliacMom2008]

It sounds like you're comfortable with her diagnosis already. Some people need the biopsy results to accept the diagnosis and go gluten free. I agree totally with Fiddle Faddle on calling the GI office. If her blood tests were positive the only thing left for them to do is a biopsy. They could schedule that without actually seeing her (which could greatly shorten your wait), but doctors offices aren't always logical. Insurance gets in the way sometimes I think!

The only thing I would caution is that you may not see immediate results from the gluten-free diet and it will be hard on her and you in the beginning. There's a big learning curve. You wouldn't want to try the diet and after 3 months start second guessing yourself - does she really have it, should we have done the biopsy??

From what I've read the blood test is 98% accurate and I believe its weakness is in false negatives more than false positives.

If you do decide to go gluten-free before the biopsy, keep in mind that if you decide to do the biopsy you're going to have to put her back on gluten for quite awhile before you can do the test.

Good luck with your decision! And when you do go gluten-free, let us know if you have any questions!

[caligirlmom]

Thanks for the advice. I'm going to call the Gastro doctor today and ask if they can order the biopsy now so that there will be less time to have to wait for that last piece of confirmation. My daughter has had symptoms of non growth. no puberty, bone scans that show she is very behind, muscle cramping, etc. for a while now. She vomits and has loose stools very frequently. She is starting to show puberty signs so I want to help that along (so I don't want to wait any longer). The Celiac positive blood result was a suprise but looking at symptoms, I think it adds up.

Her appointment is a couple of weeks away still so I think I will call the office again and tell them that she is feeling pretty sick right now and if they could speed up the process in any way by ordering the biopsy now instead of after our first visit, it would be soooooo appreciated.

I'm so glad I found this forum. You all have been so comforting for me to know that there is somewhere that I can go and ask questions to people that have gone through the same issues.

I'll let you know how it goes and I'm sure I'm goign to have lots of additional questions.

--caligirlmom

[caligirlmom]

I called the gastroenterologist and they won't pre-schedule the biopsy before seeing the initial visit with the doctor. I understand that they have a process but my poor child is suffering. I packed her a gluten free lunch today for school but I'm afraid I shouldn't be starting this before the biopsy if it is going to cause problems with the diagnosis.

My gut feeling is that I have to act. I have to try to provide some help for her sooner than later. I don't think she can wait for another month or two for all these tests to basically tell me how bad it is. I'm confident at this point since her blood test is positive that she has the disease. The treatment is the same anyway...gluten free diet.

Does anyone know how quickly a gluten free diet will change the villi (typically)? Maybe I am worrying over nothing. Her appointment is a few weeks away and the biopsy will probably end up being about 5 or 6 weeks away at the rate the appointments work.

I'll do a little surfing on the web to see if I can find out more, but any more input is appreciated.

Thanks,

caligirlmom

[wsieving]

I'm very new to all of this, but personally if she is suffering that much and you already have positive bloodwork, I would change her diet unless they think they may find something else during the endoscopy. In the end, do what you and your daughter are comfortable with. I'm sorry the doctors are taking so long and I hope your daughter starts feeling better soon!

[gadaboutdiner]

I think it would be WRONG to wait 2 months to take a proactive step. My nephew and his wife are expecting their first child in October and I am advising them to educate themselves completely on gluten allergies. Our family has been rife with digestive disorders, some culminating in cancer. It is not difficult to put a baby on a gluten-free diet. And a child raised gluten-free will develop healthy taste preferences and eating habits. It's called PREVENTION.

Caligirlmom will have more difficulty because her daughter's diet preferences have already been established, but she should start immediately to substitute gluten-free foods at home. (Oats, by the way, do not have gluten, but they are milled with the same equipment used for milling wheat. There is considerable cross-contamination. Buckwheat, on the other hand, is not wheat at all. It is a gluten-free seed and is a delicious cereal substitute.)

I think Caligirlmom's biggest challenge will be educating her daughter about the potential health dangers if changes are not made and teaching her daughter to become a Food Detective committed to listening to her body and making necessary diet changes.

I diagnosed myself several years ago and have followed a mostly-gluten-free diet for that period. I recently tested negative for Celiac disease using a blood test. My body has made a different diagnosis and I'm listening to my body and redoubling my efforts.

If you're allergic to gluten, you might have multiple other food allergies. I got a lot of help from the Eat Right 4 Your Blood Type book, switching to rice milk, and eliminating all homogenized dairy products. This includes most commerical yoghurts. I seem to have no trouble with raw milk cheeses.

As far as Caligirlmom's question about damage to the intestinal villi, I've been on a 1 1/2 year concentrated quest to repair the damage. FIRST, though, one must stop further damage from occurring with the dietary changes. I am having excellent results from coconut oil. There is quite a lot of information on the web. Research "coconut oil and candida," or "coconut oil and" whatever symptoms your daughter has. (Candida is a common byproduct of intestinal damage.)

There are nutrtional supplements, such as IntestiNew, which repair the damage. And adding a "bifidobacterium lactis" supplement is necessary. This is the probiotic formerly known as "bifidobacterium infantis" and is the first probiotic detectable in infants.

[caligirlmom]

Wow am I feeling overwhelmed. Thanks for everyone's input. We started my daughter on a gluten free diet while we are waiting for the rest of her doctor appointments to come about. Already my head is spinning. I found lots of information about what to look for on labels, but there are soooo many unknowns. So many ingredient labels say things like "food starch" or "coloring". I have been told that these may be problems. What do you do? Call manufacturers to find out what is in "food starch" for their product?

Educating my daughter is harder than I thought too. I don't think she fully understands what the consequences are for cheating on this. She doesn't understand that it's pretty much all or nothing. She doesn't like any of the bread substitutes that we have tried so far. I'm going to try to make some homemade tomorrow. We have a long journey ahead of us I'm afraid. But we will make it work.

I am hoping to gain more knowledge so that I can help others on this board too (rather than just asking questions). But thanks for all the opinions/answers so far and letting me air my concerns.

[happygirl]

Hopefully this will make your life easier with food label reading ---

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Hope this helps.

[gadaboutdiner]

Caligirlmom's "overwhelmed" sounds soooo familiar. I have a theory that our very favorite foods are the worst foods for our health. My Mom was absolutely addicted to bread. When we took her out to dinner, she ate all the bread served and asked for more. She passed in 2003. The last 20 years of her life were a terrible struggle with the food allergies and GI problems before she was diagnosed with cancer.

My nephew is the Youth Pastor at his church. Recently I decided to pick his brain about behaviors we were noticing in our teenage granddaughter. He said, "There's ONLY ONE THING you have to remember: teenagers MUST feel they belong to the group. It is their internal driving need."

So, if I were in your situation, I would try to find the most explicit "wake-up-call" video on gluten intolerance/celiac disease and use it to educate my daughter. That would get her "brain" going in the right direction. THEN move in the direction of creating a new group for her to "belong" to. (This website is probably an excellent place to start.) That would get her heart going in the right direction. A "gluten-free" cooking class with other teenagers sounds interesting!

If you have a really good health food market in your area, they will have gluten-free breads. Usually in a refrigerated area separate from regular bread. I have found none I like without lightly toasting it first. I use a gluten-free sandwich bread, lightly toasted, to make hot dogs. I toast a piece in the morning and put coconut butter on the hot bread and cover it with almond butter. Very good.

If you do have a health food market, introduce yourself to the Nutrition Department supervisor. That person should be very helpful in directing you to the correct items in the market.

Possibly you would feel more empowered if you concentrated on finding 2 or 3 of your daughter's favorite foods in a gluten-free form. Telling a teenager she cannot have pizza is a REAL bummer. Maybe, if that is a food she favors, that would be the place to start: a gluten-free pizza recipe! Sunset Cookbooks, years ago, had a Pizza with Zucchini Crust that was quite nice. Celiac and gluten sensitivity have become so common, though, that you should be able to do much better than that.

In California we have a well-known hamburger chain that includes on its menu a Lettuce Wrapped Burger. It's messy but delicious. They use the largest Iceberg letttuce leaves and include all the yum fixings. Many Vietnamese restaurants have "Lettuce Wrapped Chicken" (or other meat) that is wonderful.

Hang in there, Caligirlmom. And don't do all the cooking and shopping and searching yourself! Your daughter REALLY NEEDS to become proactive in her own diet change and recovery. Realistically, you cannot do this for her. You can only help her do it for herself.