Follow up endoscopy and biopsy 14 years post celiac diagnosis

[stephaniekl]

My college age daughter has been having pain. She has had reflux and ulcers, as well as celiac.  She has been gluten-free for 14 years.  She found a new gastro in her college town and he scheduled an endoscopy with biopsies.  He told her she must eat gluten every day for a week prior to biopsy. I am stumped by this.  We know she has celiac.  She had a biopsy and it was positive. She has all the genes, etc.  Why is he saying she needs to eat gluten?  She will be so sick? Is normal?  We have never had this before.  

[trents]

Apparently, the new GI doc is not buying the previous diagnosis of celiac disease and feels the need to confirm it for himself/herself. I would look for another doctor. 

[RMJ]

Not only is the doctor being ridiculous, having her make herself ill so he can re-diagnose her already diagnosed celiac disease, but one week of gluten, while able to cause GI symptoms, might not be enough to cause new damage visible with a biopsy. So if she follows his advice he might say she doesn’t have celiac disease!

She needs a different doctor.

[stephaniekl]

I suggested she just not eat gluten ans still have the scope because of the pain she has been having.  She has lost significant weight and is failure to thrive at almoat 21.  She has had GERD and bleeding ulcers previously and is having those issues now.  She also has systemic sclerosis, so we know those things are issues with that.  We will find her a new doctor back home too. 

[trents]

Have you considered putting her on the autoimmune protocol diet? 

[RMJ]

6 minutes ago, stephaniekl said:

I suggested she just not eat gluten ans still have the scope because of the pain she has been having.  She has lost significant weight and is failure to thrive at almoat 21.  She has had GERD and bleeding ulcers previously and is having those issues now.  She also has systemic sclerosis, so we know those things are issues with that.  We will find her a new doctor back home too. 

A much better suggestion than that of the new doctor!

[stephaniekl]

4 minutes ago, trents said:

Have you considered putting her on the autoimmune protocol diet? 

We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.  

We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses. 

Thanks for your help! 

[trents]

Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while?

I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.

[knitty kitty]

@stephaniekl, welcome to the forum,

Is your daughter taking any nutritional supplements?  

Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.  

I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies. 

Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system. 

Thiamine helps the immune system fight off viruses like those tick borne illnesses.  

Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine.

Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.  

Keep us posted on your progress!

Interesting Reading...

The importance of thiamine (vitamin B1) in humans

https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].

[stephaniekl]

9 hours ago, trents said:

Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while?

I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.

They have not done that yet.   We are looking at some other treatments to help. And you are correct.  The tickborne illness has been a wild ride.  Our whole family has been battling different tickborne illnesses.  Its expensive and exhausting.  

[stephaniekl]

9 hours ago, knitty kitty said:

@stephaniekl, welcome to the forum,

Is your daughter taking any nutritional supplements?  

Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.  

I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies. 

Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system. 

Thiamine helps the immune system fight off viruses like those tick borne illnesses.  

Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine.

Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.  

Keep us posted on your progress!

Interesting Reading...

The importance of thiamine (vitamin B1) in humans

https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].

She used to take supplements, but her abdominal pain is so debilitating that she hasn't been able to continue.  Her primary care team has been suggesting liquid supplements rather than pill form to help.  They just drew a lot of blood Friday and we are slowly getting all that work back.  I will definitely check into thiamine!  Thanks!