15 Year gluten free, however...

[suzy q]

I weighed 91 lbs.when I was diagnosed with celiac sprue. Been g.f. ever since. I guess i'm lucky in that if I even accidently get gluten in my system, in 1 and 1/2 hrs. I am puking and well,you know..the other. I now weigh 134 at 5.1'!! Hold on this is just the beginning of my oh so cruddy journey. Oh yeah. I'm 68 yrs. and feel 80 with sooo many new and improved symptoms!! Pain literally everywhere. Head to feet. Weakness, jerking, pain never lower than 4 (personally, I like the faces, from smiles to tears and rage}.I am more in the 8-9area, and this is almost every day.I never know when or how bad it will be, so I can't commit to anything. I learned that the hard way. Almost 4 years now and they,(the many different Docs PAs ,ect.) can't seem to come up with an answer. I know autoimmune diseases can trigger other auto. diseases, but they don't listen. With the list I gave them of symptoms, the basic diagnosis has been..HUH. I'm a cheerful person, and my Christian faith is deep,and spiritually strong. It is the 1 thing I hold on to amidst the pain. Married 30 yrs. 2 sons 7 grand kids 1 brother left. We have lost Mom88, Dad69, Brother 53, Sister 57, Bro.in law 55, Son, and very soon a Sister in law67. My thought is, as of now I would rather die by 70 ( I'm sure I'm goin up<well,pretty sure) than live with this pain till a good old age of 90. Thanks for letting me vent!, and may the Lord bless you all richly everyday!! loveya

[Wheatwacked]

Welcome to the forum suzy q,

What your doctors are missing is the malnutrion.

 At 73 I am aproaching 30.  At 6'2"  went from 185 pounds all belly fat, looked like a Mad Magazine margin cartoon, down to 150 and now stable at 165 lbs.  Even wear the same sizes as when I graduated high school.

The most important:

• Vitamin D at 80 ng/m. Thats 10,000 iu a day to maintain.
• Iodine . I'm taking 1600 mcg a day and have improved skin, hair, hearing, blindiness in right eye is improving, muscle tone, As kids in the sixties, we got iodine from milk and eggs and bread.  The population average intake today is one half that of 1970. 
• Thiamine
• Choline

Quote

The Third National Nutrition and Health Examination Survey study of samples collected from 1988 to 1994 showed a median urinary iodine excretion of 145 μg/L, well above the lower level considered to reflect adequate intake (100 μg/L) (WHO Nutrition Unit, 1994), but this is a decrease from the value of 321 μg/L found in a similar survey in the 1970s (Hollowell et al., 1998). Estimated iodine intakes for Canadians are in excess of 1 mg/day (Fischer and Giroux, 1987)  https://www.ncbi.nlm.nih.gov/books/NBK222323/ 

 

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1625 mcg of Liquid Iodine a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

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, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

Edited July 30 by Wheatwacked

[Wheatwacked]

What meds are you on?  For me they were a source of pain.

 Amlodipine major dryness to eyes messed with my contactsl did not help BP

Lisinopril caused inguinal hernia due to that persistant cough. even in combination with amlodipine did not effect BP. Doctor fired me.

New doctor: Atenolol had me bent over like a 95 year old needing a cane or walker. Hydrozoline completely destabilized my knee. I;d have ended up in a wheelchair had I not refused to continue it.  Metformin for high glucose turned me into a zombie and glymeperide a robot (Danger Will Robinson).  Glipezide: total energy crash.

Clonidine keeps my BP usually around 132/65.  Side effects, some cool visual effects with color vision, has been good for my ADD.

Doing much better without drugs for glucose.  It does not make sense to take a drug that makes you sicker in order to prevent something based on the statistics of a wheat eating cohort.  With high glucose I am getting healthier.  Symptoms that " high glucose may cause.." are actually improving.  Doesn't make sense  I have increased glucose baseline 180 mg/dl and iodine to 1650 mcg and vision is returning to my right eye.

Perhaps the nutritional advice we've believed for the past fifty years has been about a healthy economy, not population after all.

 

[Scott Adams]

How long have you been gluten-free?

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[knitty kitty]

@suzy q,

Welcome to the forum! 

I have had pain from crushed vertebrae, but I found that a combination of Thiamine (in the form called Benfotiamine, Vitamin B 1), Pyridoxine (Vitamin B 6), and Cobalamine (Vitamin B12) have analgesic effects.  

Doctors are not given much nutritional education, so they miss the importance of correcting malnutrition resulting from Celiac Disease.  Correcting nutritional deficiencies is extremely important.

A Nutritionist familiar with celiac disease should be able to help you with a nutrient dense diet.  

There are eight essential B vitamins that all work together interconnectedly, four fat soluble vitamins, and a dozen trace minerals that our bodies need.  Omega Three fats are very important as well.  Without these, our bodies cannot function well, resulting in pain and fatigue.  

Focus on a diet which includes fresh vegetables and fruits and meat.  Exclude processed gluten free facsimile foods which are devoid of nutrients.  Gluten free processed facsimile foods are NOT enriched with vitamins like gluten containing counterparts.  

I like the smiley to crying faces on the pain scale, too.  My pain was so severe I broke three molars gritting my teeth in pain.  They don't have a picture for that one.  I couldn't take morphine type pain killers because of the resulting constipation which caused as much, if not more, pain.  So, I tried Thiamine, Cobalamine, and Pyridoxine.  It really works.  

So glad you have a strong faith. My journey has helped me separate the wheat from the chaff.

Hope this helps!

References:

Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review

https://pubmed.ncbi.nlm.nih.gov/35156556/

[Alwiene]

You might want to look into oxalate sensitivity. Can cause a lot of pain and is sometimes the reason people with celiac don't completely improve even on a gluten-free diet. 

[Scott Adams]

Good point @Alwiene, and I've updated the article I shared to include oxalate sensitivity, which we've done some articles on here:

https://www.celiac.com/search/?&q=oxalate&type=cms_records2&quick=1&search_and_or=and&search_in=titles&sortby=relevancy

I also added Lectins, and here are the articles we've done:

https://www.celiac.com/search/?&q=Lectins&type=cms_records2&quick=1&search_and_or=and&search_in=titles&sortby=relevancy