jebby

Hi JMG,

I am glad that this helped you. Sometimes I have no idea if anyone is reading…I have some family members who get very ill from gluten but have tested negative for celiac disease. They are all GF and I suspect that at least a few of them actually have celiac disease that was not picked up on testing.

All the best to you. This is a great website for advice, guidance, and support.

Jess

Hi Kittyluvr, It sounds like it could be...we are really in a new world of medicine these days, especially with problems related to celiac disease. There are some really good resources online and also a few Facebook groups that have been invaluable to me on this journey. Good luck! Jess

You are welcome! I appreciate the feedback and am glad that you found it helpful! Happy weekend!

J

Hi Newtoitall, Based on the available research this 5 to 6 months seems to be the optimal window, but keep in mind that every few years the recommendations seem to change! Good luck to you on your gluten-free journey! Jess

Hi Itchy Abby,

2 interesting things:

1. TTG 3 is only available for research purposes at the current time

2. During the opening lecture on Mon. September 23rd Dr. Peter Green point blank stated that if a patient has dermatitis herpetiformis that they have Celiac Disease (no biopsy needed). It is the only time that I have ever heard him claim that a biopsy is not needed.

Jess

Hi again,

I suspect that if/when the other TTG types are tested for, that the rates of diagnosis will skyrocket!

Also, I am in the same boat with you with my family members. About 20% have gotten tested (my mom and I both have it) and the rest have refused, even those with other autoimmune diseases. Sometimes I feel it is easier to convince strangers to get tested than my own family members!

J

Hi Irish Heart, It truly was the development of the neuropathy that made me decide to start to write about all of this. Thanks for sharing your story too. I am so glad that you opted to not take medication for fibromyalgia and that you finally were able to get to the root cause of all of your problems (Celiac).

I have to throughly review the obstetric records of all of my patients' mothers (I take care of preemies) and in doing so, I am seeing more and more young women with diagnoses of fibromyalgia, migraines, unspecified neuropathies, etc. I suspect that gluten may be the culprit in many cases. And these are young, young women, mostly in their twenties.

Thanks for taking the time to stop by and comment!

Jess

You are welcome. I'll be posting more soon!

Hi, It was discussed as being a good alternative to the TTG IgA, especially in children under 2.

One of the major themes repeated over and over again during the ICDS is that tons of biopsies are still being done incorrectly (not enough samples of small bowel tissue taken, needs to be at least 4 to 6, and/or wrong areas being sampled).

Hi Susan,
I am so sorry to hear about all of the suffering that your little boy has experienced. It seems like in most cases the biggest source of cross contamination is when people keep a shared home and kitchen? Is your entire house GF? If it isn't, it am help to take all gluten out of the home. I am just about the most Type A person in the world, and although I thought I was doing my best to be GF in my home and keep all of my stuff separate, I failed miserably.
As for GF foods and snacks, it takes time to figure of what will work for your family. I have 4 kids under 8 and they snack on fruits, veggies, yogurt, raisins and dried fruits, popcorn, cheese sticks, etc. I do a bunch of baking in large batches and freeze the leftovers so we can get them out easily, I.e. cookies and muffins. It gets easier with time.....I wish that I could give you more advice. I have a lot of friends whose kids have food allergies, and most of them pack their kids their own food to bring to birthday parties and school events, etc.
J

Hi NoPainNoGrain,
Thank you for sharing your story. It sounds like your intestines may not be fully healed yet (and, hence, not ready for grains). I hope that you find a diet this works for you.
Jess

Hi Josie,
I am sorry that I am just seeing this now. I think that you are getting differing advice because you fall into such a gray area of what to do. Although it makes sense to wait to heal, improve your bowel absorption, and rest (as I wrote about in this paper when I reviewed this topic), if you are 37, your fertility is rapidly dwindling. Although I cannot give true medical advice on here, if you were a friend of mine I would suggest trying for the baby! I hope that whatever you choose, that things go well for you!
J

I ended up banning buckwheat and discovered it was indeed a big problem for me.

I am checking my nutrient absorption to check healing. It seems reasonable to me. Great progress has been made the past 7 months!

That is such great news that you are feeling better and realizing that certain GF grains do not work for you. Quinoa really did a number on me in the beginning.

Hi D,

The more women that I hear through from my main blog, the more I am convinced that a lot of us have a mast cell problem in addition to Celiac Disease.

I am in the midst of getting my insurance to approve a trip to the Mayo Clinic for an evaluation. Once I go there I will report back what I find.

J

Hi snash, You are welcome. There seem to be a LOT of us who have both Celiac Disease and problems with our menstrual cycles. Although there must be a relationship between the 2 problems, research into this is really lacking. I wish you the best on your gluten free journey!

Why cant you post it ?

I am not sure. I have been unable to post for the last few weeks because my posts stay stuck in draft mode. Peter, the admin, has been posting for me since I can no longer do it myself. Are you having similar issues?

Hi D,

Glad that you are feeling better and that your vitamin and iron levels are trending in the right direction!

Jess

Hi D,

Good to "see" you and glad we are back to blogging (even though we can't post!) Hope your sister finds it helpful!

J

Mr. GF, That is very sad that your own MD, who has Celiac Disease, does not keep up to date on the management of your shared problem. This is a misperception that this is an easy disease to manage, since it is diet controlled, but as we all know it can be quite a challenge to avoid small amounts of incidental cross contamination. It's a lot more difficult than taking a pill...
Jess

- Gluten challenges in children with Celiac Disease may increase the risk of the development of additional autoimmune disorders, such as type 1 diabetes…

And yet, many pediatric GIs will insist upon this step as part of the diagnosis.

Thanks for posting this informative article, Jess.

Hi Irish Heart, It is nice to "see" you on here. I hope that parents can bring this info forward to their kids' physicans to challenge them when they recommend a gluten challenge. Just about all MDs have access to "Up to Date" and should be able to read the article which I summarized. I think it is important for patients to have as much knowledge as possible and be involved in the decison making process.

All the best to you!

Jess

You are welcome. Thanks for stopping by!

You are welcome! I hope that you begin to feel better soon!

I have been unable to post my last 2 blog entries and they are stuck in draft form. Does anyone know if/when the problem has been fixed?

Thanks BitterGrad for sharing your experience. I hope that in the (not to far) future that Fasano's diet becomes the standard of care for newly diagnosed Celiacs. Had I known of this back when I was diagnosed, I would also have stuck with whole foods for the 1st 3-6 months.

Jess

I am going to remember to check this. I haven't scratched out buckwheat, but it is on my lists of suspects.

How are you checked for healing?

Diana

Hi Diana,

The "gold standard" would be a repeat biopsy, but I think that for a lot of us who decide to go this route, we would expect to feel a lot better and experience much less cross contamination.

Jess