coping with new diagnosis

[momtoceliac]

we are three months in and still low iron and anemia, i know healing takes time and it seems others are not so patient or understadning after the crisis, or get the context, 

[trents]

Welcome to the forum, momtoceliac!

It takes on the average about 2 years for the damaged intestinal villi to heal.

Concerning low iron and anemia, have you been checked for pernicious anemia? It's anemia characterized by an inability to assimilate iron from the diet because of damage to the parietal cells in the stomach which are responsible for the uptake of vitamin B12. B12 is necessary for the assimilation of iron in the diet and with pernicious anemia, the ability to absorb B12 is severely impaired. You might research "pernicious anemia".

Having said that, are you taking any vitamin and mineral supplements to offset the nutritional deficiencies that inevitably accompany long term, undiagnosed and unattended celiac disease? Have you confirmed that all of your supplements and meds are gluten free? Wheat starch is sometimes used as a filler in pills. We commonly recommend an adult multi vit, B-complex, sublingual B12 (preferrably the methylated version since it is absorbed better), 5000IU of D3 and magnesium glycinate.

Celiac disease damages the villi of the small bowel where essentially all of the nutrition in our food is absorbed. So, even when you are eating well, you aren't absorbing the nutrition well in the food you are eating.

[momtoceliac]

yes i know the part on the villi, and i hear all of this, im hoping the low iron will improve with the iron meds he is on, and he is eating more now, thank goodness, they had him on ensure, they had him on protein shakes, all had wheat.. it was a terrible pre diagnosis awful experience

  On 10/22/2022 at 9:34 PM, trents said:

Welcome to the forum, momtoceliac!

It takes on the average about 2 years for the damaged intestinal villi to heal.

Concerning low iron and anemia, have you been checked for pernicious anemia? It's anemia characterized by an inability to assimilate iron from the diet because of damage to the parietal cells in the stomach which are responsible for the uptake of vitamin B12. B12 is necessary for the assimilation of iron in the diet and with pernicious anemia, the ability to absorb B12 is severely impaired. You might research "pernicious anemia".

Having said that, are you taking any vitamin and mineral supplements to offset the nutritional deficiencies that inevitably accompany long term, undiagnosed and unattended celiac disease? Have you confirmed that all of your supplements and meds are gluten free? Wheat starch is sometimes used as a filler in pills. We commonly recommend an adult multi vit, B-complex, sublingual B12 (preferrably the methylated version since it is absorbed better), 5000IU of D3 and magnesium glycinate.

Celiac disease damages the villi of the small bowel where essentially all of the nutrition in our food is absorbed. So, even when you are eating well, you aren't absorbing the nutrition well in the food you are eating.

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.. yes to vitamis... and i feel since it was so intense,that there should just be a period of celiac recovery-- like any major diagnosis, many not so understanding and oblivious to what happened, and the hardships 

[trents]

Okay, sorry. I did not understand you were not asking for yourself but for, I assume from your screen name, your son? How old is he?

It can be painful when family and friends are not onboard with the diagnosis of celiac disease but many on this forum have and are struggling with that dynamic. You should read this article that appeared in the forum. I think you will relate: 

Have you been tested for celiac disease? One large study done by the Mayo clinic found that 44% of first degree relatives of those with celiac disease were found to have it themselves. Most of the were caught by surprise because they didn't have dramatic symptoms, They were "silent celiacs. Like any other health issue, best to catch it early before damage is done to other body systems.

Is your home gluten free?

[momtoceliac]

yes all new to gluten-free, and started 3 months back - yes i am gluten-free (nearly 100) I am noting reaction now to gluten, (rash),i tested neg. for, I went gluten-free with him, (found it super hard and def. have glute with my other 2, who also have to be tested in case silent c, yes.. this needs to be our next step, as other family in the house have reduced gluten, and need the test to verify, so we can know how to do this,

[momtoceliac]

just to clarify- i am a mom to a celiac, and i went gluten-free with him to help him, 

[trents]

Valid testing requires still eating regular amounts of gluten up to the time of the blood draw. The Mayo Clinic guidelines for a pretest gluten challenge leading up to the day of the blood draw is the daily consumption of 2 slices of wheat bread (or the equivalent amount of gluten) for 6-8 weeks. Sounds like you and other family members have already cut back or cut out gluten. The testing is designed to measure antibody levels from the inflammation that regular gluten consumption causes. If you significantly cut back or cut out gluten the inflammation begins to subside.

[momtoceliac]

  On 10/23/2022 at 2:19 AM, trents said:

Valid testing requires still eating regular amounts of gluten up to the time of the blood draw. The Mayo Clinic guidelines for a pretest gluten challenge leading up to the day of the blood draw is the daily consumption of 2 slices of wheat bread (or the equivalent amount of gluten) for 6-8 weeks. Sounds like you and other family members have already cut back or cut out gluten. The testing is designed to measure antibody levels from the inflammation that regular gluten consumption causes. If you significantly cut back or cut out gluten the inflammation begins to subside.

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yes...... so strange that this wasnt requested immediately thank you for all your answers- its all helpful

[trents]

Unfortunately, most primary care physicians are woefully lacking in knowledge about celiac disease and fail to tell their patients things like this. And so, many people are left in limbo, wanting to know for sure they have celiac disease (as opposed to Non Celiac Gluten Sensitivitu or NCGS) since they cannot handle the thought of torturing themselves by goin back on gluten for weeks before testing after they have already begun the gluten-free diet and are starting to feel better. And docs typically do not order thorough testing for it. Many will only order the tTG_IGA antibody test instead of a full celiac panel. The tTG-IGA misses 20% of people who actually do have celiac disease if they are of white European decent and misses 80% of those from black African heritage.