Desperately need help with wife and my gluten allergy.

[Stulos]

She has been to the doctor with me. Has read the reports. Has read the report from the hematologist trying to get me into the NIH diagnosis program. She was with me when I had my positive chemical tests. 

She is actually the one who figured out all of this stuff. Including wheat. She used to be all about protecting us from it and was even known for it. I remember when she got mad at her mom because her mom wouldn't stop feeding colors and stuff to our daughter and it kept messing her up.

Something snapped and changed in her mind and I really don't know what. It's only been more proof after more proof but she just aint buying it anymore.

One thing I do know is she considers eating that stuff "normal" and thinks not doing it is an eating disorder. I can't see how people eating things that make them sick is normal but then again I guess a lot of people do it.

She has more knowledge and understanding than most though. Now she looks up things online to basically confirm what her new theories are.

I can't eat rhy or barley. I remember years ago getting mad sick from trying frosted flakes because they have malt flavor in them. I've tried other things like that and it's the exact same reaction. Thanks for the idea though. I wish I could. If I could have an actual tested diagnoses maybe it would change her mind.

Actually while I was typing that I realized that she was there when the positive chemical tests were done and she still said the same stuff about the chemicals, that I was borderline and not having a reaction and I was using it to control her. It was the same thing so I guess it wouldn't even help.

[Wheatwacked]

At 63 male I looked 8 months, carrying high.

All the above is correct. Here is how I finally put it together.

• Your vitamin D,  25-hydroxy vitamin D test, if you get tested is going to be in single digits.  That affects your emotional states, autoimmune system, bone density, ability to fight infections, ability to get along and have hope and less depression.  It is imperative that you raise that to around 80 ng/ml as quickly as you can.  Nothing less than 10,000 IU of vitamin D3 will work as quickly and you seem at the end of your rope.  By day 4 the vitamin D changed my attitude and gave me hope.
• Testing for vitamin D and homocysteine will tell you much about your B vitamin status and cardiovascular inflammation.  Whatever it is you need more than you are getting.
• After a week or so of vitamin D3, add 500 mg Thiamine or Benfothiamine. I think individual vitamins is better because you can guage each one's effect on you and you are not getting  stuff added for marketing purposes.
• Another week add B3. B3. Nicotinic Acid may cause itching and flushing for a few days. It is simply the relaxed capillaries and more blood flow. It passes. Nicotinimide and No Flush B3 don't increase blood flow so you don't get the reward.
• then B5, B12.
• Next add 500 choline,. brain fog, gall bladder, fat digestion. 
• Next add 500 Taurine.  Taurine is a conditional essential amino acid.  A powerful antioxidant it specifically targets oxidative stress in the eyes and from the creation of ATP.

If you take them all at once, you will feel so good you cannot stand it and you will stop. Adding them in one by one lets you adjust to feeling better.

No gluten is a given.

This is not intended as medical advice. Just how I reversed my malnutrition after many dead ends. There are around 20 essentials affected by malabsorption caused by Celiac.  These are the ones to help getting your head straight and body energized.

Minimum RDAs may be enough for healthy people, but sick people need more.

[Stulos]

Thanks Wheatwacked. That’s really thorough and helpful. I’m going to try that protocol and see what it does. Super appreciated.

[Wheatwacked]

Keep us updated.  I eat mostly garden salad and salmon, ground beef, cooked ham, swiss and sheep feta. 12 ounces of salad 4-8 ounces protein per meal.  Cherry Magnesium Citrate.  2 ounces in a 20 ounce cup of ice water.  580 mg magnesium per two ounces and it tastes like lemonade, absorbs quickly. 5 servings per bottle.  That's a dollar a day.  (price tripled since the pandemic).

The order except vitamin D first, doesn't matter, you might want to do B3 last because it is annoying at first.  The goal is to raise these vitamins to a level that is suffiicient for daily needs and start to store. And to let your body know the famine is over. 🤸‍♂️

[shadycharacter]

On 6/12/2023 at 11:31 PM, Stulos said:

Back then it was hard because I was a mess. We knew not to do it though and just like the wheat the chemicals became a power struggle and she was saying the same things then. That it's not real. I'm just borderline and the symptoms are caused by anxiety.

She doesn't do or say that about chemicals anymore. It's just wheat now. She also says it when there's a disagreement. It's like she is trying to keep me in that sick box and it hurts bad. 

None of those severe symptoms are here anymore because the chemicals got dealt with and I'm not constantly in that reactive state. It's really hard to have the same power struggle and fight and hear the same things as when I was in that shape from chemicals and wheat. Back then she was bringing wheat into the house too.

It's like we didn't learn anything from doing it wrong. Well I think I did. She's still saying the same stuff though. Just about half of what it used to be. I don't understand it. She saw me get so much better. She sees what I'm like when I'm not exposed. When she's nice and happy she will even say it. But when she's upset it all turns back to that and I can't help getting sick. I really can't.

I'm really cooperative too. If she wants to do things a certain way I really try to. The only thing I can't help is the allergies.

If she tries to keep you in a sick box you need to consider Munchhausen by proxy and be really careful. 

[DebJ14]

On 6/12/2023 at 7:24 PM, knitty kitty said:

 

I would not be surprised if Michelle had Celiac herself and is in staunch denial.  

 

This line hit home for me.

  After I was diagnosed my sons were tested.  One has Celiac Disease and the other just NCGS, but very, very sensitive.  The doctor suggested the my son's wife be tested too.  She assured everyone that she was fine, but the doctor said she had many of the extra-intestinal symptom.  She refused testing for nearly a year.  She finally agreed to the blood work and genetic testing.  She had both HLA DQ2 and HLA DQ8 genes and all her bloodwork was off the chart positive.  Her endoscopy  found damaged vilii at every site they biopsied.  Needless to say, she was shocked.  The gastro put both their children on gluten-free diets as he said with both parents having 2 genes (our son has 2 copies of HLA DQ2) there is no way the kids escaped.  The oldest already had been diagnosed with failure to thrive.  At 3 he was only 19 pounds and off the bottom of the height chart.  Within one month of going gluten-free he gained 6 pounds and grew 2 inches.  He also got off the liquid claritin.  It was gluten causing his snotty nose and eyes.

Our daughter in law became a zealot.  Because of her genetic test it was obvious that her parents at least passed her the genes.  She insisted both parents get tested and sure enough both have it and are now on gluten-free diets.  Although, it has been challenging making them understand why they need to eat gluten-free, after more than 70 years of consuming gluten.

[Miriam Reiss]

You keep calling your relationship a power struggle. That's not the big picture. Counseling won't do it for people with NPD. She will continue to project her own issues on you. At some point, you'll figure out that you need to leave the relationship. Nothing about it is serving you or your condition. Good luck.

[trents]

OP's spouse has been accused of "gas lighting" and diagnosed in this thread as suffering from "Munchhausen by proxy" and Narcissistic Personality Disorder. I would remind this forum community that we have only heard one side of the story. Yes, we need to support the OP but do it without turning on his spouse, someone none of us has ever met.

[Miriam Reiss]

This is a place where the Celiac community can freely express challenges and invite responses, knowing that there will be a wide range of comments. 

[shadycharacter]

1 hour ago, trents said:

OP's spouse has been accused of "gas lighting" and diagnosed in this thread as suffering from "Munchhausen by proxy" and Narcissistic Personality Disorder. I would remind this forum community that we have only heard one side of the story. Yes, we need to support the OP but do it without turning on his spouse, someone none of us has ever met.

I'd like to point out that I chose my words a bit more carefully than claiming to diagnose anyone with Munchhausen by proxy. I said consider Munchhausen by proxy. As in do not rule out.

[knitty kitty]

@trents,

Since we are not allowed to diagnose on this forum, most of us can, and do, offer information from our own personal experiences for comparison.  

Putting a framework around a problematic situation can help define and direct the potential paths one could take.  

It is the OP's responsibility to choose the framework best suited to his situation and which path to persue. 

[trents]

1 hour ago, knitty kitty said:

@trents,

Since we are not allowed to diagnose on this forum, most of us can, and do, offer information from our own personal experiences for comparison.  

Putting a framework around a problematic situation can help define and direct the potential paths one could take.  

It is the OP's responsibility to choose the framework best suited to his situation and which path to persue. 

Yes, I realize that but I also felt uncomfortable with people piling on his spouse when we don't know her side of the story.

[knitty kitty]

@trents,

We don't know the wife's side of the story.  But as posted, Eric OP hasn't painted her in the best light, either, although he seems reluctant to do so.  

For those of us who have encountered people with symptoms of narcissistic personality disorder or munchausen syndrome, we see red flags.  Not so much "piling on his spouse", but responding to the emotional turmoil the OP Eric is going through in that situation. 

[Wheatwacked]

     Both sides are blaming each other for their woes.  I learned from working in an alcohol rehab hospital ward as an orderly and later on as an alcoholic myself that healing starts only when you accept personal responsibility.  A friend of mine is bipolar, they are married twenty years, and the interaction here seems similar. She is not responsive to his needs, currently gluten free environment and he is demanding she change, give up gluten.  She is looking at this as one more in a series of OCD inspired compromises he is demanding and she is standing her ground.

     On the other hand, I get the impression that the household is gluten free; a major concession by her.  The current battlefield is eating gluten in the car.  Both are wrong. Both are right.  Perhaps an additional car?

     The combination of Bakers Asthma and Celiac Disease together is rare but not unheard of.  Celiac Disease in a Patient with Baker’s Asthma and Wheat Allergy  Possibly not helpful that the doctor agrees with the wife that it is not celiac disease: "My doctor said it's not celiacs, it's a straight up allergy." Who to believe, the learned doctors with a medical degree or the husband with another OCD focus?  The OP never mentions a Celiac Disease or even NCGS diagnosis, antigens or biopsy, only multiple doctors saying it is an allergy.

     Kind of irrelevant, since in any case treatment is the same, though as an allergy he should own an epipen.

     We all know how difficult it was to give up gluten.  In my family I am not allowed to even bring up the subject any more. They get sicker and I am getting healthier. So be it.

[shadycharacter]

Wheatwacked,

He's asking her to spend 20 seconds wiping the car after she's been eating wheat there. Because it gives him symptoms doing it himself. And when he gets ill it may last for days. 20 s for her v days for him.

And she accuses him of being manipulative and calls him borderline. Which is her diagnosing him. 

As long as he's too sensitive to do a gluten challenge, celiac or NCGS can't ruled out. The allergies are verified, and a wheat allergy can be even more serious than celiac. 

The thing seems to be the switch. She used to be caring and supportive. 

It's a very difficult situation with kids involved. Not something you just walk away from. If a boyfriend treated me like that, I'd break up. With family there are too many ties. 

And even though one doctor said it wasn't celiac, the immunologist said the test was negative but that it couldn't be ruled out and that he should avoid it. If he was already avoiding wheat it's no surprise the test was negative. Why would she go by the "doctor's" word and not the immunologist?

Edited June 21, 2023 by shadycharacter

[knitty kitty]

A Genetic test doesn't require consuming gluten.  

Genetic tests for OP and the kids seem reasonable.

[Wheatwacked]

On 6/14/2023 at 2:31 PM, Stulos said:

Thanks Wheatwacked. That’s really thorough and helpful. I’m going to try that protocol and see what it does. Super appreciated.

Eric, Have you got test results for vitamin D blood level?  You can get it done at a lab or mail order for around $25. If cost is an issue pipingrock.com, where I get mine, has 10,000 IU D3, 250 capsule bottle for $13.49 shipping is around $5.  Or take 10 1,000 IU capsules.

     Investıgation of vitamin D levels in obsessive-compulsive disorder     "The serum vitamin D levels of the OCD group were found to be significantly lower than the control group. Serum vitamin D levels were negatively correlated with the obsession, compulsion, and total scale scores measured in YBOCS but there was no correlation between the serum vitamin D levels and illness duration of OCD patients... Low levels of vitamin D can increase the severity of OCD symptoms as they decrease the amount of serotonin by decreasing tryptophan hydroxylase synthesis... The number of participants with vitamin D insufficient (20–30 ng/mL) and vitamin D deficiency (< 20 ng/mL) in the OCD group was statistically significantly higher than the control group (p < 0,001) and also the number of participants whose vitamin D levels were in the normal range (> 30 ng/mL) in the OCD group was statistically significantly lower than the control group (p < 0,001)."

[shadycharacter]

2 hours ago, Wheatwacked said:

Eric, Have you got test results for vitamin D blood level?  You can get it done at a lab or mail order for around $25. If cost is an issue pipingrock.com, where I get mine, has 10,000 IU D3, 250 capsule bottle for $13.49 shipping is around $5.  Or take 10 1,000 IU capsules.

     Investıgation of vitamin D levels in obsessive-compulsive disorder     "The serum vitamin D levels of the OCD group were found to be significantly lower than the control group. Serum vitamin D levels were negatively correlated with the obsession, compulsion, and total scale scores measured in YBOCS but there was no correlation between the serum vitamin D levels and illness duration of OCD patients... Low levels of vitamin D can increase the severity of OCD symptoms as they decrease the amount of serotonin by decreasing tryptophan hydroxylase synthesis... The number of participants with vitamin D insufficient (20–30 ng/mL) and vitamin D deficiency (< 20 ng/mL) in the OCD group was statistically significantly higher than the control group (p < 0,001) and also the number of participants whose vitamin D levels were in the normal range (> 30 ng/mL) in the OCD group was statistically significantly lower than the control group (p < 0,001)."

Vitamin D is also thought to stabilize mast cells. So it seems to be quite an important vitamin for anyone with allergies. Personally I often feel better after getting vitamin D the natural way, from the sun. But that is not always possible, at least not where I live. 🙂

https://pubmed.ncbi.nlm.nih.gov/27998003/

[Stulos]

I have a pretty bad and serious update. I had to give up on her wiping the car but now she is actively getting together with kids and bringing wheat to the house and inside and it's kept me sick and she's saying I won't clean up anything when I'm sick. Multiple kids are blaming me. They are saying I'm mentally ill and I don't have allergies like that. They are buying what makes me sick, bringing it right in front of me and exposing me and then calling me crazy.

She kept telling me lots of people have allergies and they have what they are allergic to in the house. I told her people on a gluten forum didn't think that was cool and she said to go find another forum.

'I'm tired of being kept sick. I'm tired of my kids being involved and corrupted and I'm beyond tired of being called mentally ill.

She is actively dividing everyone now. She has ramped up the exposure to crazy levels past what I was just describing to you. I was severely sick for over a week recently.

She said we need a third party to decide if wheat can hurt me. I don't exactly know how the immunologist and the hematologist don't count as a third party. It's all sick and I'm terrified and hurt and have no idea what to do. I just know this is destructive and ugly. And she's getting kids to do it too now. Again.

Oh and one kid who knows things he eats mess him up is doing it the most with her and he's calling me crazy and treating me like I'm a nobody too.

I'm not doing anything to people but working on the house and when I get exposed to wheat say it's not supposed to be here. It's not. We bought the house knowing it. They moved back in the house knowing it and promising. That promise keeps getting betrayed.

[trents]

Does she understand that celiac disease is not an allergy but an autoimmune disorder?

Is it time for you to separate from your family, at least for a period of time, and move to an environment that is safe for you? Don't misunderstand me to be implying you are crazy but I want to again emphasize you need to seek out regular mental health counseling for the support and guidance it can give you. You need to change something here and since you can't control the behavior and attitudes of your family members you need to change what you have control over but you likely will need help in doing that. Hence, my recommendation for you to seek out counseling.

[knitty kitty]

Have you ever had a DNA test for Celiac Disease genes? 

If you've got the genes, and you're sick around gluten, you probably have active Celiac Disease.  

Your genes don't change.  You don't have to be eating gluten to test for Celiac genes.

This latest behavior of your wife has got all my red flags waving.  She is really scary.  My prayers are with you.  

[Stulos]

My insurance there aren't any therapists who do televisits and I can't go somewhere because of the chemical reactions. That's also why there isn't a place for me to go that's safe.

I think I did have a genetic celiacs and it was negative.

[shadycharacter]

1 hour ago, Stulos said:

I have a pretty bad and serious update. I had to give up on her wiping the car but now she is actively getting together with kids and bringing wheat to the house and inside and it's kept me sick and she's saying I won't clean up anything when I'm sick. Multiple kids are blaming me. They are saying I'm mentally ill and I don't have allergies like that. They are buying what makes me sick, bringing it right in front of me and exposing me and then calling me crazy.

She kept telling me lots of people have allergies and they have what they are allergic to in the house. I told her people on a gluten forum didn't think that was cool and she said to go find another forum.

'I'm tired of being kept sick. I'm tired of my kids being involved and corrupted and I'm beyond tired of being called mentally ill.

She is actively dividing everyone now. She has ramped up the exposure to crazy levels past what I was just describing to you. I was severely sick for over a week recently.

She said we need a third party to decide if wheat can hurt me. I don't exactly know how the immunologist and the hematologist don't count as a third party. It's all sick and I'm terrified and hurt and have no idea what to do. I just know this is destructive and ugly. And she's getting kids to do it too now. Again.

Oh and one kid who knows things he eats mess him up is doing it the most with her and he's calling me crazy and treating me like I'm a nobody too.

I'm not doing anything to people but working on the house and when I get exposed to wheat say it's not supposed to be here. It's not. We bought the house knowing it. They moved back in the house knowing it and promising. That promise keeps getting betrayed.

I'm so sorry to hear about the latest development. I think it could count as some form of abuse to deliberately expose someone who is allergic or intolerant to what makes them ill. It could also be abusive to systematically dismiss someone as mentally ill. It could be a good idea to try to document what is happening, even if it's only keeping a diary as a record.

Perhaps there are some organisations or charities that can help? I think some charities for victims of domestic abuse focus on men as victims, and are aware that not all abuse takes the form of physical violence. At least it could be someone to talk to about possible ways to deal with the situation. 

If you as a couple previously had an agreement to not bring what you're sensitive to into the house, then I don't see how it could be right for her to suddenly do so. 

What are her goals, I wonder.

Could you talk to a lawyer? Or get some support from a doctor? Though even they don't always realise how sensitive people can be.

When it comes to allergies it's not unheard of to have some common allergens banned in certain areas. Peanuts being banned in schools, for example, and on flights. Simply because people can get seriously ill. And people with a cat allergy can't have a cat in the house even if they don't touch it. Perhaps it easier for people to understand your condition if it is described as an allergy. It is possible to be allergic specifically to the gluten proteins in wheat, and that can be the most serious form of wheat allergy. 

 

[Stulos]

I do describe it as an allergy. As far as I, and my immunologist, can see it is. She says it's not and I'm mentally ill.

Says that right in front of kids and now some of them are saying it.

I did have a lawyer I spoke with once say it was considered abuse to make someone sick with an allergen you know they have. I don't know who that person was though and can't contact them again. I was calling around once desperate when I was made to live in that shed for over a year. 

[knitty kitty]

51 minutes ago, Stulos said:

My insurance there aren't any therapists who do televisits and I can't go somewhere because of the chemical reactions. That's also why there isn't a place for me to go that's safe.

I think I did have a genetic celiacs and it was negative.

You need to have a genetic test done that looks for ANY genes for Celiac Disease, not just the most common ones.  

If you're reacting to environmental triggers, you need to look into Mast Cell Activation Syndrome (MCAS) and nutritional deficiencies in vitamins and minerals that help lower histamine levels:  Folate, Cobalamine, molybdenum, Vitamin C, Pyridoxine and Thiamine.