Possible Celiac Disease

[milo2007]

Good evening. I have recently lost 28 lbs in weight over a four month period. My hair is brittle and falling out. Had bloods apparently all within range. Had endoscopy and colonoscopy. Both clear. Small bowel capsule noticed some veins and cysts that could possibly be causing my bleeding. My stools are semi formed and not pleasant. This has been going on for a short while. I am always being diagnosed with anxiety. I also had been diagnosed with a mass on my chest which seems to be a thymic cyst! Also during an MRI I have been diagnosed with kidney cysts, liver cysts and ovarian cyst… lots of cysts going on. What can you do next in relation to excluding Celiac ?

[cristiana]

Hello @milo2007 and welcome to the Forum!

I see from the the tests you have no damage to your gut, so in terms of whether gluten has a part to play in this, can I ask were you consuming gluten every day before the tests, and if so, how much and for how long? The reason I ask is if you had been on a gluten free diet prior to the tests, then your gut might show no sign of damage, rendering the tests invalid.

If you had been consuming gluten prior to your tests, it is possible that you might have Non-Coeliac Gluten Sensitivity, which can cause a number of symptoms but your gut will show no damage. 

Perhaps you could clarify whether you've been eating gluten or not.

One other question - have you had any thyroid tests recently?  Thyroid issues can cause weight loss and brittle hair.

Cristiana

 

[milo2007]

Hi,

Thyroid test clear. I had the blood tests for anti bodies  and both were within normal range. I have asked the gastroenterologist could I have celiac disease but not at the duodenum where the biopsy was taken and he said nothing in life is guaranteed apart from death and taxes? 

[cristiana]

Mmm... not the most helpful reply there from your consultant.  Actually, you raise something there, if insufficient biopsies were taken something could have been missed.  Sorry - going back to gluten, were you eating it prior to the tests? 

[milo2007]

I had not eaten gluten for five days well as much as I could avoid and he said that was not a problem. My stools are fatty and not greatly formed. My vitamin D was 28 and I needed an iron transfusion back in March. I have put on a little bit of weight. I am concerned I have damaged my intestines and not absorbing all the correct nutrients. On vitamin D tablets and I have got myself some multivitamins. 

[cristiana]

Hi @milo2007

I think I'd like some of my fellow mods to come in at this point to see if they have any thoughts.  Will keep an eye on this thread over the next few days and see what they say.   

The thing is, you could try going on a gluten free diet right now to see if you start to put on weight, but I'd like to hear from them in case they think it is worth asking a second opinion.  

I am not sure where you are posting from, but I'm in the UK whereas most of the mods are based in the USA, so bear in mind they may not see this for a while.

Cristiana

Edited July 19, 2024 by cristiana

[milo2007]

Thanks for your support. I have stopped all gluten for five weeks. I am also waiting for a blood test for Myasthenia gravis. Is it possible to repair complete villious atrophy 

[cristiana]

If coeliacs follow a strict gluten-free diet, the villi begin to heal and function again properly.  However, this article may be of interest it contains research findings that show the process can be long and in some people incomplete.

https://www.verywellhealth.com/celiac-disease-when-will-your-small-intestine-recover-562341

[Wheatwacked]

Yes the damage can be repaired if you also fix the nutrient deficiencies inherent in the Western diet as recommended by the government agencies.

If you don't need an official diagnosis removing Gluten alone, if you are Celiac Disease, stops the ongoing damage from getting worse, but does not address the malnutrition.  It seems to me that most doctors will diagnose Celiac Disease, reluctantly, and leave you with the advice "Don't eat gluten, goodbye and good luck.

 

3 hours ago, milo2007 said:

My stools are fatty and not greatly formed.

Suspect Choline Deficiency, an essential nutrient that it is estimated that 90% of westerners are not getting even the minimum RDA of around 500 mg a day.  Are you eating liver, eggs, red meat?  It takes 10 cups of cooked brocolli or 4 eggs a day.

     "Choline is a fat emulsifier and reduces the surface tension in fat and bile. Choline is one of the salts you will see in healthy bile which allows the body to breakdown fat into fatty acids for the building of the brain, supplying cell membranes, and dozens of critical processes of the body. It also breaks down the plaquing that you see from toxic buildup in the brain causing amyloid plaque."  Choline - The BlLE Salt

3 hours ago, milo2007 said:

My vitamin D was 28

What measurement system? Either way 20 ng/ml  is deficient, 20 nmol/L is well below deficient.  The general consensus being that levels below 20 ng/mL are considered deficient, while levels between 20-29 ng/mL are considered insufficient. Do you want just adequate?  That number is based on the level needed to prevent Rickets.  Ignoring the effects of low D on the immune system and mental health.  Raising vitamin D should be high priority for you.  The normal level for vitamin D according to a study of Israeli lifeguards in August is about 200 nmol/L (80 ng/ml.)  Read this:  Vitamin D Is Not as Toxic as Was Once Thought:  A Historical and an Up-to-Date Perspective.   The UK led the way to low D in the 1950's by banning vitamin supplementation after a manufactuing error of baby formula.  At 10,000 IU a day you will quickly see improvement.  It took me from 2014 to 2019 to raise my level to 49 ng/ml and another two years to reach 80 ng/ml even at that level of supplementation. 

"Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion, it based its conclusion on the literature that reported that pregnant rodents receiving intox icating doses of vitamin D delivered pups with altered facial features,...As a result, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D."

3 hours ago, milo2007 said:

I needed an iron transfusion back in March.

Vegetarians do not get enough vitamin B12.  B12 deficiency can cause anemia.  

Quote

Deficiency of vitamin B12 (cobalamin), like folic acid, results in megaloblastic anemia (large, immature red blood cells), due to interference with normal DNA synthesis... Large amounts of folic acid (over 1,000 μg per day) may conceal, and possibly even exacerbate, an underlying vitamin B12 deficiency.  Vitamin B12

4 hours ago, milo2007 said:

My hair is brittle and falling out.

Iodine deficiency.  As long as you don't have Dermetitis Herpetiformis feel free to increase your iodine intake.  I take 1625 mcg of Liquid Iodine as a daily supplement with Amazing inprovement in healing, skin, energy, muscle tone.  Even the blindness in my right eye has improved over the last six months since I started the iodine.  Start low 115 mcg a day, the RDA, and increase over time.

 

3 hours ago, milo2007 said:

Myasthenia gravis

Myasthenia gravis (MG) is a chronic autoimmune disorder in which antibodies destroy the communication between nerves and muscle 

So here you might consider that vitamin D is ubiquitous in autoimmune diseases and Choline is an essential ingredient for acetycholine, an important neurotransmitter.

Remission of Severe Myasthenia Gravis After Massive-Dose Vitamin D Treatment

     In myasthenia gravis, antibodies (immune proteins produced by the body's immune system) block, alter, or destroy the receptors for acetylcholine at the neuromuscular junction, which prevents the muscle from contracting. Causes of myasthenia gravis

Low D allows the immune system to run amuck.

The safe range for Choline intake is from minimum 450 mg to 3500 mg.  With receptors impaired, it seems the higher intake would be beneficial.

Thiamine B1 is another vitamin that is often deficient with Malabsorption, yet the medical opinion is that it is not a problem outside of the third world.  You might notice a similarity between your symptoms and those of a recovering alcoholic.