Frustration And Fear

[4livefree]

This post may be a bit long, but I will attempt to give the condensed version of our experience. Our child started vomiting 2 months prior to the 2nd birthday.Growth on the charts began to change. Weight began to climb and height leveled off, but did show steady upward progress. We have been thru allergy testing (highly positive for Celiac) then onto Gastro (negetive biposy), neuro consult (negetive in all testing), Endocrinologist (negetive in all testing), Metabolic specialist (phone consultation-nothing to add), and now 6 years later back to the allergist. The allergist insists that this is a Celiac issue. Our child has most all of the symptoms listed with only 2-3 not matching. He has advised us to start on the gluten/wheat free diet.

The diagnosis given so far have been Cylical Vomiting Syndrome and Thrifty Metabolism Syndrome. Weight has continued to climb and is now off the charts on the high end of the chart. Height remains at the 60% level. Vomiting has been intermitant and stomach pain has increased. We have been thru so much testing (CScan of abdomen and head, blood tests (chronically iron deficient even on iron, swallow study, emptying study, etc...)

Since starting the gluten/wheat free diet, she seems to be getting worse with the nausea, lethargy, and stomach pain. The diet was started about 3 days ago. We don't know what to do? Our child would rather not eat than try to eat and throw up or have the stomach pain. Any ideas or advice? Is this reaction just part of the detox process from gluten and wheat?

[mushroom]

Hello, and welcome to the forum.

Apart from taking her gluten free, have you modified her diet in any other way?

It is generally a good idea to remove dairy (or at least lactose) at first because she may have damaged villi which will not permit her to digest lactose. Since her intestinal tract is so stirred up from vomiting and nausea, it is also a good idea to go with a very easy to digest diet, like soups and stews containing just meats, veggies, rice,minimal fruits (no skins and nothing acidic). Give her a chance to settle down before adding other things and then only adding one thing every three or four days to see how she handles things. Use a whole foods diet and avoid the gluten free processed foods.

Keep us advised of how she progresses.

[rosetapper23]

I agree about taking her off dairy initially, and you should also know that many celiacs are unable to digest soy products (except fermented types like gluten-free Tamari sauce, which is a substitute for soy sauce). Some of us are also sensitive to oats (even the gluten-free type) and iodine.

[4livefree]

Hello, and welcome to the forum.

Apart from taking her gluten free, have you modified her diet in any other way?

It is generally a good idea to remove dairy (or at least lactose) at first because she may have damaged villi which will not permit her to digest lactose. Since her intestinal tract is so stirred up from vomiting and nausea, it is also a good idea to go with a very easy to digest diet, like soups and stews containing just meats, veggies, rice,minimal fruits (no skins and nothing acidic). Give her a chance to settle down before adding other things and then only adding one thing every three or four days to see how she handles things. Use a whole foods diet and avoid the gluten free processed foods.

Keep us advised of how she progresses.

Thanks for the quick reply. They have had us go dairy free in the past with no change. Is that something that we should try again now? I really am having a hard time with meal preparation without making our child feel left out. There is little in the way of comparision for taste and texture of the foods we have tried. You can tell that our child really wants to eat "real" food and misses the taste. Our child takes a couple of bites of the gluten free foods and tells me she doesn't like it and just simply walks away and doesn't eat. There is a great sadness about her now. She asked me if this will be forever. I explained to her that it most likely will be.

What our doctor told us to do is switch her at a fast gradual pace. When we are completely switched over to totally gluten free to count 6 weeks and then go back to see him. He really thinks we will have a different kid. She is sick all the time. Now she is sad. Is this a normal "grieving" phase for her?

I agree about taking her off dairy initially, and you should also know that many celiacs are unable to digest soy products (except fermented types like gluten-free Tamari sauce, which is a substitute for soy sauce). Some of us are also sensitive to oats (even the gluten-free type) and iodine.

Both my husband and I are allergic to shellfish (iodine included), and soy. Our children tend to navigate towards the like allergies that we have so it is a good thought. Thanks for sharing. This is going to be a lot more difficult than I already thought.

My husband was recently diagnosed with Type II Diabetes. Would going gluten free be good for him as well? I am about to loose my mind trying to fix meals for our whole family. Not to mention going broke trying to pay for all the special diets as well. I feel like I am a short order cook when it comes to family meals now.

Any creative ideas on how to afford a gluten free diet for a fairly large family?

[M0Mto3]

Just out of curiousity, how old is your husband? Three years ago my husband was diagnosed with Type 2 diabetes for about two days. His doctor realized pretty quickly that he actually had Type 1 and was still in the honeymoon phase. In other words, he still had some insulin producing cells, but within a few months these were completely killed off. When in the honeymoon phase they appear to have Type 2 diabetes because they are still producing insulin. How long ago was he diagnosed?

My daughter is 17 months and we believe she has Celiac's. Her bloodwork was not positive, but she is diagnosed wheat intolerant (long story, stupid GI doc!). Type 1 diabetes and Celiac share the same genes, so I can't imagine she doesn't have Celiac's.

As for feeling different, my little one is still too small to know any different. But, she was a different baby within 4 days of going gluten free. If I were in your shoes I would get rid of gluten 100% now. I would also cut out dairy, for the reasons pp said. Maybe for now feed her naturally gluten free products and gradually add the other gluten free foods.

[mommida]

There is a natural grieving process giving up gluten, but this does not seem to fit the pattern of most Celiac kids. This is food aversion.

How often is your child going through cycles of vomitting? What is the genetic background? Did you breastfeed? Was the time that breastfeeding stopped that digestive problems started?

Was your child ever scoped with biopsy?

There are a number of things that can present as Celiac symptoms. (It is also possible to have Celiac and another disorder. Having a Celiac diagnoses can also make it harder to have the other disorder diagnosed.)

You really should be working with a pediatric gastroenterologist. In the meantime, some tests that can be done at the ped.'s office would be stool testing for parasites. Keep a food journal. (with amount, time consumed, BM's, symptoms) Some reactions from food "allergens" can last up to 12 days.

[mushroom]

Our child takes a couple of bites of the gluten free foods and tells me she doesn't like it and just simply walks away and doesn't eat.

My husband was recently diagnosed with Type II Diabetes. Would going gluten free be good for him as well? I am about to loose my mind trying to fix meals for our whole family. Not to mention going broke trying to pay for all the special diets as well. I feel like I am a short order cook when it comes to family meals now.

Any creative ideas on how to afford a gluten free diet for a fairly large family?

A gluten free diet does not have to be expensive. You can healthily convert your whole family to gluten free eating by sticking to the basics of meat, fish, vegetables, fruits, rice, perhaps some Tinkyada rice pasta and some Udi's bread. You can make stews and soups, casseroles, sautees, stir fries, etc., and all eat the same thing. Chex makes Rice gluten free cereal, and this is delicious with almond milk. (Okay, this would be more expensive but one extravagance.) If your daughter saw that you were all eating the same food she would have no cause to complain that she was being deprived or singled out. And if you have a crockpot you can easily do this. That would be the way I would handle it, and it would be a good way to see if your husband was helped too. There is no reason for you to have to cook separate for everyone in the family. You are the cook - this is what is for dinner!! Lunches can be leftovers or open-faced sandwich and fruit, or home-made soup (crockpot again). It is a very healthy way to eat and is a good way to eat for sensitive stomachs. Do not give your daughter tough-skinned fruits like apples, tomatoes, broccoli, corn. Make sure that her foods are well-cooked and easy to digest.

[Thorski'smom]

This post may be a bit long, but I will attempt to give the condensed version of our experience. Our child started vomiting 2 months prior to the 2nd birthday.Growth on the charts began to change. Weight began to climb and height leveled off, but did show steady upward progress. We have been thru allergy testing (highly positive for Celiac) then onto Gastro (negetive biposy), neuro consult (negetive in all testing), Endocrinologist (negetive in all testing), Metabolic specialist (phone consultation-nothing to add), and now 6 years later back to the allergist. The allergist insists that this is a Celiac issue. Our child has most all of the symptoms listed with only 2-3 not matching. He has advised us to start on the gluten/wheat free diet.

The diagnosis given so far have been Cylical Vomiting Syndrome and Thrifty Metabolism Syndrome. Weight has continued to climb and is now off the charts on the high end of the chart. Height remains at the 60% level. Vomiting has been intermitant and stomach pain has increased. We have been thru so much testing (CScan of abdomen and head, blood tests (chronically iron deficient even on iron, swallow study, emptying study, etc...)

Since starting the gluten/wheat free diet, she seems to be getting worse with the nausea, lethargy, and stomach pain. The diet was started about 3 days ago. We don't know what to do? Our child would rather not eat than try to eat and throw up or have the stomach pain. Any ideas or advice? Is this reaction just part of the detox process from gluten and wheat?

Hi. I just stumbled on this post and I realize it is a few months old but I wanted to respond. I am 38 years old now and was diagnosed at 35 years old. I have vomited my entire life until about 6 months after I was diagnosed in June of 2009. I was the tallest girl in the first grade but incredibly thin and I was a very small infant and toddler then I would have moments through primary school that were ok and I seemed healthy. My parents did not know to take me to a gastro, they thought I was a picky eater and were more concerned that I had an eating disorder. I have been very successful in life, I have a genetics degree from Berkeley and I grew up to be very athletic even though I suffered from long periods of flu like symptoms and pneumonia.

When I was first diagnosed had just given birth to my son through a difficult pregnancy. During my pregnancy I was put on Zofran because I was vomiting over 12 times a day. 9 months after my pregnancy I was still vomiting at the same rate. that is when my doctor ran the test. I always keep a prescription of Zofran just in case I make a mistake eating out but that rarely happens anymore.

The stomach pain is one of the harder things for me to handle. But after the lesions caused from vomiting heal that pain will not be as bad. The most important thing is to not vomit so you don't aggravate the healing process.

There is a test called the HLA Celiac Typing test that is in most electronic medical record lab orders. This is a genetic test that can rule out celiac disease. If you don't have the HLA DQ2 or HLA DQ8 allele of the gene than you don't have celiac disease. The paper can be found in the genetics section of the Nature journal in 2002 or 2003. It costs $30 but it is worth reading.

I also wanted to add that my husband became gluten free with me and follows it as if he were suffering with celiac disease. His strength made me understand why it is recommended that the family eat gluten free. When I feel angry about this I look at him doing it when he does not have to (even when he is mad at me) and it makes me strong. I see this as a fact of life and we have experimented with foods and found everything I liked before and it takes time but you can find the right recipes or restaurants if you do it as a family.

There is also a tax deduction for the money you spend on groceries/food after 7.5% of your income. I talked to my CPA and he said there was a long involved way of doing that or you could produce your diagnosis from your doctor (which they can't force you to do because of HIPPA).

Hope this helps:) Theresa

[mushroom]

Hi Thorski'smom. Do not get too hung up on the genetic testing for celiac. It is certainly not definitive. There are two really common genes, DQ2 and DQ8, and these are what are commonly tested for and cover the majority of celiacs. However, you are not excluded from being celiac if you do not have either of these two genes -- other genes are recognized in Europe as being celiac genes also. So not having either DQ2 and DQ8 does not preclude celiac disease --it just rules out the most common of the celiac genetic inheritance genes -- and having these genes alone does not guarantee you will get celiac, it just predisposes you to it.

You have a very thoughtful, caring husband who is willing to eat gluten free to take care of your health. I am sure you count him as a treasure and appreciate his thoughtulness.