Desperate for an answer

[Courtneylb]

I have diarrhea that worsens with eating, bloating, extreme fatigue, abdominal and joint pain, ataxia, itching, dry eyes and  mouth, slurring of words, memory loss Hashymotos thyroiditis, + ANA of 80 treated for lupus for a year than sent elsewhere. fecal elastase of 88, itching, psychosis, bipolar, depression ADHD, and anxiety for 40 years. Multiple cousins with same issues and one that has passed from non hodkins lymphoma. I've been to many drs for help but no one can find the answer. I'm having a blood test next week I've had a neg test before but I have a feeling that I was not eating gluten at the time. I just learned that causes a false negative. So I m wondering if my symptoms sound like celiac to you? A Dr diagnosed me with epi but Creon has made me worse.

[Wheatwacked]

Hi Courtneylb and welcome to the Celiac.com forum.

The short answer to your question is is all of the above.

There are several hundred symptoms connected to gluten consumption.  Some autoimmune attact by our overworked immune system, some malabsorption of essential nutrients, some deficiency due to food avoidance.  Some of your symptoms could be side effects of a medication you are taking to treat something else.

Celiac Disease Blood Antibody Tests

Beside your antibody tests these other blood tests could be helpful to know because your symptoms indicate malnutrition.  Homocysteine, 25 hydroxy vitamin D, Erythrocyte Transketolase test for thiamine, B12, Folate, B6, test for anemia.  Maybe they've been done recently.

Eat as much gluten as you can.  Was My Gluten Challenge Too Short? The blood tests measure antibodies.   When you get the tests back, ask for a copy and if you can post it with the normal range someone here can help you understand.  See the link on Testing 101  

300 Signs and Symptoms of Celiac Disease

If you have tried gluten free, did anything improve?

Many of your symptoms will improve with a gluten free diet but more quickly with the right vitamins and minerals.  They all have multiple functions and can affect multiple things.

All are important but MOST important in my opinion are Vitamin D, Thiamine, and Choline.

Here are what I take. 

• 10,000 IU vitamin D to control autoimmune.
• 500 mg Thiamine - neurologic symptoms, carb metabolism
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp

"as a part of the natural aging process."  Not True.  It is a result of a lifetime of unrecognized malnutrition and if you are Celiac or Non Celiac Gluten Sensitivity by gluten's affect on your body.  The faster you replensish your deficient vitamins and minerals to well above the minimum RDA the quicker you feel better.

diarrhea, bloating, extreme fatigue, abdominal pain. joint pain, ataxia, itching, dry eyes and  mouth, slurring of words, memory loss  depression, ADHD, and alcoholic for 30 years, mouth breather, swollen prostate at 21.

I was significantly stupider at 63 than I was at 12.  Much of that has come back.  Also I wear now the same sizes as I did at 25.

There were 19 in total symptoms I had that have improved some the day after I started, some took me time to realize and find the right nutrients I needed to bolster in by diet.

Quote

EPI - Structural changes occur in the pancreas as a part of the natural aging process. With aging, also the incidence of maldigestive symptoms and malnutrition increases, raising the possibility that these might be caused at least in part by inadequate pancreatic enzyme secretion due to degenerative processes and damage of the gland. Fecal elastase-1 is a good marker of pancreatic exocrine secretion.

That's doctor speak for "we know what but we don't really know why.

sorry if this seems curt.

 

Edited October 15, 2023 by Wheatwacked

[Courtneylb]

7 hours ago, Courtneylb said:

I have diarrhea that worsens with eating, bloating, extreme fatigue, abdominal and joint pain, ataxia, itching, dry eyes and  mouth, slurring of words, memory loss Hashymotos thyroiditis, + ANA of 80 treated for lupus for a year than sent elsewhere. fecal elastase of 88, itching, psychosis, bipolar, depression ADHD, and anxiety for 40 years. Multiple cousins with same issues and one that has passed from non hodkins lymphoma. I've been to many drs for help but no one can find the answer. I'm having a blood test next week I've had a neg test before but I have a feeling that I was not eating gluten at the time. I just learned that causes a false negative. So I m wondering if my symptoms sound like celiac to you? A Dr diagnosed me with epi but Creon has made me worse.

Thank you for your information! I really appreciate it. I'll respond when my tests come back. I had vit d was 26 and B12 was normal.

 

[Courtneylb]

I forgot that I have the MTHFR gene. Does that mean that celiac is out or do some people have both? I'm not sure what kind of Dr to go to as once you give them a long list of symptoms they usually tune you out.

 

 

 

 

[Wheatwacked]

Actually your MTHFR is another reason to drastically increase your Choline intake.  Choline, B6 and Folate with the assistance of B12 help keep your homocysteine in range.  Homocysteine is the result of protein metabolism and higher levels >18 are an independant indicator of of cardiovascular inflammation.   Mine ranges between 14 and 21.

     Choline and Folate share responsibility for prevention of Neural Tube Defects in embryos. NTD is why folic acid is fortified in food in the US; but not gluten free food.

If you follow the recommendations (misguided in my personal opinion) over the last 50 years to limit eggs, liver, beef then you are likely to be among the 90% of the population that don't eat even the minimun amount pf choline for Adequate Intake.

        Conditions linked to MTHFR mutation  "Having one or two MTHFR mutations can slightly increase the levels of homocysteine present in the blood. This condition is called homocysteinemia...MTHFR mutations will not change a person’s treatment plan for any other condition they happen to have.

14 hours ago, Courtneylb said:

vit d was 26

Yikes!  Whether thats ngml or nmol/L it is dangerously low.  At end of summer our normal level should be around 80 ng/ml ( or 200 nmol/L) so we have enough vitamin D to last the winter.  Low vitamin D cripples our immune system, allowing autoimmune diseases and infections.

When I fill out the medical history form as a new patient I list every symptom and which improved with GFD.  The doctor's response give me a read on his attitude.  Another approach I use is to write down Talking Points and questions, print them out so it's readable and hand it to the doctor when he comes in.  I get off track, distracted easily.  It's harder to blow off a written document than my a) babbling or b) reticence to speak.  And I always forget to mention stuff I thought was important.

1 hour ago, Courtneylb said:

once you give them a long list of symptoms they usually tune you out.

Edited October 16, 2023 by Wheatwacked

[Courtneylb]

Thanks, great info. Is there a ml folate that doesn't have gluten

 

 

 

[Wheatwacked]

Geritol Multivitamins is gluten free. 167% folic acid.  No choline though.  Adequate Intake for folate and choline are both around 500 mg a day. get my phosphatidyl choline and vitamin D from PipingRock.com. Vitamins and minerals have to list gluten as an ingredient.

 

10 hours ago, Courtneylb said:

I have the MTHFR gene

     "A doctor can determine whether or not a person has an MTHFR variant by reviewing their medical history, considering their current symptoms, and performing a physical examination. The doctor may recommend running a blood test to check the person’s homocysteine levels".   There are two common types, or variants, of MTHFR mutations: C677T and A1298C."  What is an MTHFR mutation?

     Did the doctor test for the gene mutation or is he going by your history and symptoms.  Did he test your homocysteine? Is it high? Serum folate? Is it low?

     If he went by your history and symptoms to diagnose MTHFR mutation, he could be wrong.  Celiac Disease causes malabsorption of folate which will give the symptoms the MTHFR diagnosis is being based on.  Folate, Choline, and B6 are absorbed in the small intestine so your symptoms could be malabsorption caused by Celiac Disease, not MTHFR Mutation. I'll mention again that only 10% of us eat adequte choline. Folic acid and B6 is fortified in food because as a population we don't eat enough folate.  Other of your symptoms like fatigue and brain fog are also related to choline.

      I know that if I stop taking the phosphatidyl choline for a few weeks my gut problems return, I start taking Alka seltzer.  Then I start the choline and in 3 or four days I am normal again.

          " Folate Fact Sheet for Health Professionals  "Serum folate concentrations are commonly used to assess folate status; a value above 3 ng/mL indicates adequacy"

           Vitamin B6 Fact Sheet for Health Professionals  "However, celiac disease is associated with lower pyridoxine [B6] absorption, and low PLP concentrations in inflammatory bowel disease could be due to the inflammatory response.

Understanding that I am not a medical professional; if you don't have Celiac Disease I am a monkey's uncle.

[Courtneylb]

8 hours ago, Wheatwacked said:

Geritol Multivitamins is gluten free. 167% folic acid.  No choline though.  Adequate Intake for folate and choline are both around 500 mg a day. get my phosphatidyl choline and vitamin D from PipingRock.com. Vitamins and minerals have to list gluten as an ingredient.

 

     "A doctor can determine whether or not a person has an MTHFR variant by reviewing their medical history, considering their current symptoms, and performing a physical examination. The doctor may recommend running a blood test to check the person’s homocysteine levels".   There are two common types, or variants, of MTHFR mutations: C677T and A1298C."  What is an MTHFR mutation?

     Did the doctor test for the gene mutation or is he going by your history and symptoms.  Did he test your homocysteine? Is it high? Serum folate? Is it low?

     If he went by your history and symptoms to diagnose MTHFR mutation, he could be wrong.  Celiac Disease causes malabsorption of folate which will give the symptoms the MTHFR diagnosis is being based on.  Folate, Choline, and B6 are absorbed in the small intestine so your symptoms could be malabsorption caused by Celiac Disease, not MTHFR Mutation. I'll mention again that only 10% of us eat adequte choline. Folic acid and B6 is fortified in food because as a population we don't eat enough folate.  Other of your symptoms like fatigue and brain fog are also related to choline.

      I know that if I stop taking the phosphatidyl choline for a few weeks my gut problems return, I start taking Alka seltzer.  Then I start the choline and in 3 or four days I am normal again.

          " Folate Fact Sheet for Health Professionals  "Serum folate concentrations are commonly used to assess folate status; a value above 3 ng/mL indicates adequacy"

           Vitamin B6 Fact Sheet for Health Professionals  "However, celiac disease is associated with lower pyridoxine [B6] absorption, and low PLP concentrations in inflammatory bowel disease could be due to the inflammatory response.

Understanding that I am not a medical professional; if you don't have Celiac Disease I am a monkey's uncle.

Thanks for the info, it's very helpful. I had genetic testing for the MTHFR. I'm going to track down the test results today.

 

 

[Lara513]

On 10/16/2023 at 10:59 PM, Wheatwacked said:

Geritol Multivitamins is gluten free. 167% folic acid.  No choline though.  Adequate Intake for folate and choline are both around 500 mg a day. get my phosphatidyl choline and vitamin D from PipingRock.com. Vitamins and minerals have to list gluten as an ingredient.

 

     "A doctor can determine whether or not a person has an MTHFR variant by reviewing their medical history, considering their current symptoms, and performing a physical examination. The doctor may recommend running a blood test to check the person’s homocysteine levels".   There are two common types, or variants, of MTHFR mutations: C677T and A1298C."  What is an MTHFR mutation?

     Did the doctor test for the gene mutation or is he going by your history and symptoms.  Did he test your homocysteine? Is it high? Serum folate? Is it low?

     If he went by your history and symptoms to diagnose MTHFR mutation, he could be wrong.  Celiac Disease causes malabsorption of folate which will give the symptoms the MTHFR diagnosis is being based on.  Folate, Choline, and B6 are absorbed in the small intestine so your symptoms could be malabsorption caused by Celiac Disease, not MTHFR Mutation. I'll mention again that only 10% of us eat adequte choline. Folic acid and B6 is fortified in food because as a population we don't eat enough folate.  Other of your symptoms like fatigue and brain fog are also related to choline.

      I know that if I stop taking the phosphatidyl choline for a few weeks my gut problems return, I start taking Alka seltzer.  Then I start the choline and in 3 or four days I am normal again.

          " Folate Fact Sheet for Health Professionals  "Serum folate concentrations are commonly used to assess folate status; a value above 3 ng/mL indicates adequacy"

           Vitamin B6 Fact Sheet for Health Professionals  "However, celiac disease is associated with lower pyridoxine [B6] absorption, and low PLP concentrations in inflammatory bowel disease could be due to the inflammatory response.

Understanding that I am not a medical professional; if you don't have Celiac Disease I am a monkey's uncle.

Great info!
 

Keep in mind: folate and folic acid are not the same thing. If you have MTHFR, be wary of consuming items with folic acid as your body cannot process it. Most affordable multivitamins have folic acid. And they also mainly use cyanocobalamin (a form of b12) that cannot be methylated by people with MTHFR. 
Folate (aka 5-MTHF) and methylated b12 (aka methylcobalamin) are bioavailable forms that can be used by people with MTHFR. 

[Scott Adams]

The prevalence of MTHFR gene mutations varies by population. The two most studied variants are C677T and A1298C.

C677T Variant:

•   Homozygous (two copies of the mutation)**: About 10-15% of the general population.
•   Heterozygous (one copy of the mutation)**: About 30-40% of the general population.

A1298C Variant:

• Homozygous**: About 7-12% of the general population.
• Heterozygous**: About 30-40% of the general population.

The presence of these mutations can influence enzyme activity levels and is linked to various health conditions, although the exact impact can vary widely among individuals.