Refractory or super sensitive?

[Bindi]

I was first diagnosed with celiac disease nearly 14 months ago, going gluten free has made no difference for me and have now also lost 20kg. Had biopsies 3 months ago, showed ongoing damage, increased lymphocytes, villous atrophy and chronic inflammation. Repeat bloodwork I've been told doesn't look good although I've not been told what that means and the biopsies are being rechecked for refractory sprue and I've also been called in for a contrast ct scan. Hubby left back in Feb so I'm on my own with my daughter an struggling working through this journey on my own. I guess I was hoping to hear from any of you who have a similar story to mine, id love to hear how you are doing and what has helped you?

[cristiana]

Hello @Bindi

Welcome to the forum!

I wonder if you have come across this post on the forum?  Do have a read of it.

I struggled for quite a long time with ongoing symptoms and I remember seeing a lot about the Fasano diet when I first joined the forum.   I never actually adopted it, but it was on my 'to do' list had my issues continued longer term, as it seems a lot of people are greatly helped by it.  I would definitely give it try.

Does your diet contain oats still?  You may find cutting them out completely out of your diet could help (and that means even the 'pure', certified gluten free ones).    Some coeliacs react to oat protein just in the same way they do to gluten.   Also, and I can't find it now, I remember reading a story on this forum of a child not recovering until dairy was dropped from the diet, and then recovered.   Perhaps something else to try, in the short term?

Out of interest, are  you doing the usual things like not sharing butter and toasters?  Are any shared cooking utensils well washed, rinsed and squeaky clean when you use them?  Have you checked supplements and medication for gluten - I was really poorly for some time, then realised I was taking Floradix instead of Floravital iron supplement - the former has gluten in it.

Lastly, are you eating out much?  This can be a huge stumbling block to recovery.  Sadly, despite caterers' best efforts, it is still all too easy for harried service staff and chefs to make mistakes.  Only this summer I was offered a gluten-free ploughman's lunch, which comes with a huge hunk of French bread.  I thought the bread looked suspiciously 'normal' and thank goodness I checked.  Other times I've been given gluten-free pasta cooked in normal pasta water, and even a salad chopped up on a breadboard, that had crumbs in it.

Perhaps some things to consider. 

Cristiana

Edited October 20, 2024 by cristiana

[Bindi]

Thank you, no I don't eat anything unless I've prepared it myself. Have my own toaster, condiments and oven racks/trays and I certainly don't have oats of any description and nothing i take contains gluten.

This Fasano diet might be worth looking into tho, and perhaps the dropping of dairy, thankyou 

[cristiana]

I think I'd give it a try, it does seem that it helps a lot of people.  

Do let us know if you want anymore advice, and how you get on.

[Raquel2021]

On 10/16/2024 at 2:01 PM, Scott Adams said:

Many McCormick spices are labeled gluten-free:

https://www.mccormick.com/search?q=gluten-free

Here is their allergen statement:

 

 

10 hours ago, Bindi said:

I was first diagnosed with celiac disease nearly 14 months ago, going gluten free has made no difference for me and have now also lost 20kg. Had biopsies 3 months ago, showed ongoing damage, increased lymphocytes, villous atrophy and chronic inflammation. Repeat bloodwork I've been told doesn't look good although I've not been told what that means and the biopsies are being rechecked for refractory sprue and I've also been called in for a contrast ct scan. Hubby left back in Feb so I'm on my own with my daughter an struggling working through this journey on my own. I guess I was hoping to hear from any of you who have a similar story to mine, id love to hear how you are doing and what has helped you?

Let us know how it goes. I am almost on thr same boat. The only difference is my celiac antibodies are normal now but recent biopcies showed blunted villi. I am still having a lot of symptoms and cannot put weight on. Have lost a total of 18 pounds after diagnosis. 

[Wheatwacked]

Hi @Bindi

Sorry to hear about your husband,  It must be stessful.

Have your doctors suggested any vitamins and minerals.  One effect of the damage Celiac Disease has is malabsorption syndrome.  There are about 26 vitamins and mineral that are absorbed in the small intestine and that is compromised in Celiac Disease, so long term you end up with malnutrition.  Too often doctors give a diagnose and don't adress the malnutrition

What symptoms do you have?  Your symptoms can help determine which vitamins you are deficient in.

Here is the list I needed to get healthy.  Most important is vitamin D, B1, B2, B3, B5, B12, Choline (eggs and meat). Iodine. 42% US adults are deficient in Vitamin D, 90% in Choline, and  in the last 30 years iodine levels have fallen by 50% in the United States.

Here is my list:

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 500 mcg once or twice 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 – 500 mcg of Liquid Iodine 10 drops at 50 mcg per drop, once or twice 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 October 21, 2024 by Wheatwacked

[Bindi]

Thankyou for your suggestions. I've been taking supplements for my deficiencies for several months now and after having them all checked again have been told all I need at the moment is vitamin D which I'm taking.

I still experience irregular bowl motions shifting from constipation to diarrhea with mucus. Skin rashes, exhaustion, stomach bloating, gas and severe stomach pain.

[Wheatwacked]

How much vitamin D are you taking?  What is your blood test 25(OH)D results?

[Bindi]

He hasn't given me visibility into what the results read but has given me 1.25mg to take once a month

[Wheatwacked]

That is about 41 mcg a day.  I am taking 250 mcg a day = 10,000 IU.  Have been since 2015, it is what I need to maintain 200 nmol/L (or 80 ng/ml) blood level.

[Wheatwacked]

D3,1.25mg (equivalent to 50,000IU), soft gelatin capsules. Each Vit. D3 soft gelatin capsule contains Colecalciferol Ph Eur Vitamin D3 1.25mg (equivalent to 50,000IU).

A daily dose between 125 to 250 mcg seems to be better at raising your blood level.

Quote

Vitamin D Is Not as Toxic as Was Once Thought

Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and sup pressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL.

 

Quote

 

Surge of information on benefits of vitamin D

Results of the double blind, placebo-controlled study published in the May 12 issue of JAMA showed that 2,256 elderly women given a single high dose of vitamin D once a year had 15% more falls and 26% more fractures than the placebo group. 

“It is possible that the large dose of vitamin D given once yearly could adversely affect the metabolism of vitamin D, Shaker said.

“It is also possible that the large dose of vitamin D improved physical performance resulting in more active patients with a greater chance to fall. Another theory is that the high-dose vitamin D may have decreased the rate of wintertime infections, resulting in more active patients during the winter with increased opportunity for falls and fractures,” he said.

Dave McCarthy, MD, said medical research on the high prevalence of vitamin D deficiency motivated him to introduce the findings into his family practice, and his patients have had a substantial reduction in influenza and infections.

“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy, whose family practice is affiliated with The Memorial Hospital of Belleville, Ill.

“There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. Elevations in blood pressure now require many fewer medications,” he said.

McCarthy has been employing these methods since February 2007, and patient acceptance has been high. He said he checks each patient’s 25(OH)D level and supplements to reach a target of 80 ng/mL in adults and children. Of the first 1,500 patients McCarthy tested, 40% began with vitamin D levels less than 20 ng/mL and 70% less than 35 ng/mL. Only 1% initially had values within his target range.

According to McCarthy, his target range is based upon several factors:

• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
• More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;

When a patient misses dosing, an attained level of 80 ng/mL gives the patient an additional month of good levels off of vitamin D.

 

 

[Wheatwacked]

59 minutes ago, Bindi said:

irregular bowl motions shifting from constipation to diarrhea with mucus. Skin rashes, exhaustion, stomach bloating, gas and severe stomach pain.

Given these symptoms I would suspect Thiamine deficient, and choline deficient.

Subclinical Thiamine deficiency can cause gastrointestinal beriberi and low choline poor fat absorption.

Slow healing can be caused by insufficient iodine.

You refer to mg of vitamin D.  What country are you in if you don't mind my asking?  Mostly in the US it is still more common to use IU.

Edited October 21, 2024 by Wheatwacked

[Bindi]

I'm in New Zealand

[Wheatwacked]

New Zealand has a history of iodine deficiency due to low levels of iodine in the soil and changes in food habits and industry practices

[Wheatwacked]

The iodine content of New Zealand soils is low and therefore locally produced foods are also low in iodine. It is difficult for most people to obtain adequate iodine by eating foods that are natural sources of iodine, which is why commercially prepared bread must be fortified with iodine.

Since you are not eating bread, you are more at risk than normal.  There is a test Medium Urine Iodine Concentration that is more accurate for intake.  TSH and T4 won't show deficiency until it is extremely deficient.

Edited October 21, 2024 by Wheatwacked

[Bindi]

Thankyou very much, ill look to find a safe way to increase my iodine intake 🙂

[Nogluten4thisgirl]

I would get an app like Yuka. You can scan anything and everything you’re buying at the store to make sure it’s gluten free.  Stuff you wouldn’t think has gluten in it like bacon or meat can have it.  

[trents]

4 hours ago, Nogluten4thisgirl said:

I would get an app like Yuka. You can scan anything and everything you’re buying at the store to make sure it’s gluten free.  Stuff you wouldn’t think has gluten in it like bacon or meat can have it.  

Those apps are only as good as the data base maintenance is and typically, the data base maintenance is dependent on user input.

[Nogluten4thisgirl]

Is there a list of ingredients I need to look for on the label? Maybe that’s why I have a significant symptom reduction, but it’s not perfect.  My constipation is still ongoing. 

[trents]

18 minutes ago, Nogluten4thisgirl said:

Is there a list of ingredients I need to look for on the label? Maybe that’s why I have a significant symptom reduction, but it’s not perfect.  My constipation is still ongoing. 

Always read the allergen statement. Go there first. Also, watch for disclaimers like "processed on equipment that also processes wheat (or barley or rye)". And it's not just the list of intentional ingredients that you have to be aware of. Yeast extracts may be grown on gluten containing substrates for instance. Spices can be cross contaminated with gluten containing grains because of being processed on shared equipment but you will not find that disclaimer on the container. Some coloring agents like "caramel coloring" can employ wheat in the formulation. It's a minefield. Food companies are not required to list allergens that may be present through cross contamination of the ingredients given to them by their suppliers. The food companies are only required to report intentional ingredients and (maybe) cross contamination scenarios that might happen within their own manufacturing facilities. So, what it boils down to with mainline food products is that the degree of CC (Cross Contamination), if any, may vary from batch run to batch run and it may or may not be a problem for specific celiacs depending on their individual sensitivity levels.

Edited October 23, 2024 by trents

[Wheatwacked]

Hi @Nogluten4thisgirl Welcome to the forum.

Consider that gluten eating people without Celiac Disease or NCGS also get constipation.  Your constipation can be from not gluten sources..

If you only eat foods not sold in a box or bag you don't have to worry much about cross contamination.😃

I like this one: "having limited privacy when using the toilet".  Basically placing the blame on you and ignoring that the western diet itself is deficient in certain nutrients and gluten free facsimili diet you don't get the fortification nutrients added to gluten foods.

For example this link from Miralax Constipation Education with Miralax does not even mention gluten.

 

[knitty kitty]

On 10/21/2024 at 3:54 PM, Bindi said:

I still experience irregular bowl motions shifting from constipation to diarrhea with mucus. Skin rashes, exhaustion, stomach bloating, gas and severe stomach pain.

 

1 hour ago, Nogluten4thisgirl said:

 My constipation is still ongoing. 

Magnesium deficiency can cause constipation.  Thiamine deficiency can cause constipation.  Thiamine and Magnesium work together to make essential life sustaining enzymes.  

To resolve my ongoing symptoms, I chose to follow the Autoimmune Protocol Diet (AIP diet), which is a very strict Paleo diet.  

No processed foods, no dairy, no grains, no nuts, no nightshades (tomatoes, potatoes, peppers, and eggplant which all contain glycoalkaloids that promote intestinal leakage - leaky gut syndrome).  After a few weeks on this AIP diet, symptoms should improve and additional foods can be added back one at a time if no symptoms reoccur.  

Skin rashes reflect intestinal damage and leaky gut syndrome.

Bloating, gas and abdominal pain can be caused by Small Intestinal Bacterial Overgrowth (SIBO).  The AIP diet will starve out the SIBO.  Thiamine helps regulate bacterial growth in the intestines.   

Thiamine deficiency can cause Gastrointestinal Beriberi, with symptoms of abdominal pain, gas, bloating, and exhaustion.

Our blunted villi cannot absorb sufficient nutrients from foods.  Supplementing with the eight essential B vitamins, additional Thiamine as Benfotiamine (proven to promote intestinal healing), magnesium, and Vitamin D, Vitamin A (for the skin) and other essential nutrients boosts your absorption.  Villi stay blunted if not given the essential nutrients needed to regrow.

Doctors are given only twenty-four hours of nutritional education out of seven years of medical school.  They are taught nutritional deficiencies don't happen anymore in our well fed countries, but nutritional deficiencies do occur in Celiac Disease because we cannot absorb vitamins well with damaged intestinal villi. 

Do talk to your doctor and nutritionist about supplementing while healing.

https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/

[jeema]

Quote

Repeat bloodwork I've been told doesn't look good

What do you mean by this exactly if you don't mind me asking?  Antibody levels or something else?

[trents]

I was wondering that as well.

[Bindi]

He didn't give specifics, did say that all my vitamins and minerals look okay except vit D which he gave me a script for so I'm presuming my markers but that is a presumption.