Thursday, June 22, 2017

So, what do you know about Gluten?

Last time when I sat down to talk about my latest health "discovery" I had a deep down feeling: "a gut feeling" no pun intended, that there would be more to the story. It seems like it's more like an "never ending story" in my case, but I guess that's part of living our lives; we never stop learning things... or going through things.







As a recap of last post, I was telling you about how I inadvertently found out the more detailed information of Thyroid Replacement. I've read the statistics that 1 woman in 8 will have thyroid problems in her lifetime. That's a statistic that should make every one of us sit up and take notice. I've learned that we each need to be informed, since even though it might not be us, it's guaranteed that our mother, a sister, or friend might be facing this medical issue. 1 in 8; that's a LOT of us that might need information. If you haven't read my last health post you can catch up HERE.

It turns out that in a perfect world the T4 Hormone that comes in the medication Levothyroxine is supposed to convert to the absolutely necessary T3 Hormone. But in my case, and many other people's bodies, the conversion process is faulty. Many things can cause this, stress on our bodies and minds, prolonged illness or disease, lack of vitamin and mineral absorption, etc. can stop this conversion and leave us not getting the hormones that are essential for regulation of our metabolism and body systems. If you are taking Thyroid Replacement Hormone but still have Hypo-symptoms please contact your doctor and ask for a new round of tests including the FREE T3 test.

A few months ago I got started on the T3 and started feeling a little better. This is a long-term medication with a more long term result, so I didn't really expect to see improvement overnight. I still am having dizziness, fatigue, and daily unending migraine headaches. Yup, I had a feeling that there was going to be more to this story, and there is...

Two weeks ago I woke up on a Monday morning and I literally thought I was having an aneurysm in my head. My headache was so bad I couldn't function. I tried thinking what would make me feel so much worse that particular morning than I had felt in recent past. If you have a headache every day you sort of get immune to the pain and discomfort, but that day was so much different, so much worse...

When I first saw my new Internist a year ago, she mentioned Gluten Sensitivity in relation to my gut problems, but what I knew about Gluten Sensitivity was about as much as a thimble full. I made an assumption that it only related to pain and cramping in the stomach and intestines after eating wheat. I don't think she was thinking any different than I was, because I commented that I never have gut pain or problems after eating. End of discussion.





I've learned to "never say never", since that statement can come back and bite you. Because as soon as you start making assumptions you can be sure you might not know it all, which can be just as bad as knowing nothing at all.

I've been researching all the medical reasons for Migraine, Dizziness, Occipital Neuralgia, and Fatigue. Can I just say that there are so many reasons for this combination of symptoms that it will make your head spin... ha ha. great analogy. Seriously. I've had no injury, we've done tests for all the tick borne illnesses, (each and every one were negative). There is no evidence of infection, no problems with "repetitive motion" which can cause joint problems like shoulder, elbow, or wrist pain. That left Autoimmune issues as the only really viable reasoning for my situation. Almost all of the Autoimmune Illnesses and Syndromes have overlapping symptoms, mine being right there smack dab in the middle. So then I started researching all the AutoImmune Diseases with a vengeance. If I've read one article, research study, paper, statistic sheet, testimony, hospital or physician research or patient forum I've read them all... twice or three times. My brain is on overload and I feel like a second year medical student.

I have Hashimoto's Thyroiditis which is AutoImmune, so the chance of me having another one is far greater than any single problem. They call it AutoImmune and Company, because they travel in packs. But do you know what ALL the AutoImmune Illnesses have in common? oh yes, you guessed it... Gluten Sensitivity. So then on to all the research on Gluten... there are many levels of sensitivity, the most obvious would be Celiac Disease which causes inflamed intestinal walls, often with boil-like eruptions on the inner wall of the intestines. People can die from this, so it's an extremely serious illness. Then there is Gluten Intolerance, and Gluten Sensitivity. Gluten is a protein that many many people are allergic to, and one that most that suffer from it, don't even know that Gluten is the offending agent. If you have any kind of Chronic symptom or pain, please be sure and do some research, then go without Gluten for a week to see if being "free" might help.

I know people sometimes think going Gluten Free is somewhat of a "Fad", I've heard it said over and over and I think that's because it's gained a lot of attention in the last several years. I remember 10 years ago you would only see Gluten Free products in an tiny area of a Health Food store; now they are pretty much mainstream at your local Walmart.

So back to my Monday morning with the Headache from Hell... guess what I had to eat the night before... Deep Dish Pizza. oh yes, an unsuspecting frozen pizza just about did me in. Before you get all defensive, let me tell you that once I had that understanding I stopped eating Gluten. I felt better the next day, then the next day. I'm still having the same symptoms but they are improved. They aren't gone but they are not as bad as they were. And let me tell you,  I never ate much bread 'cause I never liked the way I felt, all yucky and bloated, but I never put 2 and 2 together, until I started reading and then actually cut all Gluten out of my diet. Completely out. There's a big difference in my symptom level, mostly the dizziness. Below are just some of the categories and symptoms of having a problem with Gluten.



Signs and Symptoms of Possible Gluten Sensitivity and Intolerance

1. Gastrointestinal System:  gas, bloating, severe abdominal fluid retention, cramping, pain, diarrhea, constipation, nausea and vomiting, acid reflux

2. Nervous System: dizziness, imbalance, migraine headaches, ADHD/ADD, anxiety/ panic attacks, depression, mood swings, brain fog, cognitive issues, seizures, inability to focus, Adult ADD, Peripheral Neuropathy, Occipital Neuralgia, possibly Autism

3. Skin: Psoriasis, Eczema, unexplained rashes, Acne, Rosacia, Dermatitis Herpetiformis, Keratosis Pilaris,

4. Joints and Muscles: Ataxia (loss of muscle and body control), joint pain and swelling, Arthritis, Rheumatoid Arthritis, inflammation, Fibromyalgia, fatigue, Chronic Fatigue, fluid retention in certain muscle groups

5. Lowered Immunity, Exacerbation of AutoImmune Disease Symptoms,

6. Hormonal Imbalances: mood swings, Infertility, Irregular Menstrual Cycles, Difficult Menopause, Adrenal Fatigue, weight gain or weight loss, PolyCystic Ovarian Syndrome, PMS

7. Dental Issues: mouth ulcers, canker sores, weak bones and teeth, broken teeth, tooth decay

8. Extreme Fatigue: poor absorption of Vitamins, fatigue after eating a meal or gluten, Chronic Fatigue, Anemia


I'm waiting for more test results as I'm writing this post, but I wanted to share this information with you all now, in hopes someone might have a lightbulb moment and start checking out their situation with a connection to Gluten. I realize not everyone will have this connection, but I sure would have liked to have known all this for this last several years. Even a lessening of symptoms gives me hope that I'll get past all this.

There are a lot of Gluten Free products out there, so it's not impacting us in the negative way that it could. Having my husband on board with me is a huge encouragement. He has Meniere's Disease which can be affected by Gluten. (fluid retention in the inner ear) When you've been sick what seems like forever, it's amazing how adaptable you can become. I'll let you all know how things are going soon.

 Two good sites to read. HERE and HERE

p.s. This is just my own opinion and experience, so no ugly comments please.


joining in here:

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21 comments:

  1. This is really interesting. Well, I'm glad you were able to pinpoint and address what you thought it was, and that you got relief quickly. A headache like that is very frightening - ER frightening.
    I am wondering if Mr. P. isn't gluten intolerant after reading your synopsis and some of the symptoms he presents regularly.
    Keep us posted, and I hope you're keeping a positive outlook. I would be doing exactly as you - arming myself with information (to the point where the head hurts more).

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    1. this has been like peeling an onion, Rita. there's always another layer of stuff to go through. yes, that morning was really scary and I was a crazy mess.

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  2. Thanks so much for this information Debra. I've forwarded it to my 3 daughters, all who have a few of the symptoms. One has many of them and the doctor thinks lumpus. The symptoms sound so much like gluten.

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    1. both my girls are gluten free and have been for awhile, they just feel alot better when they don't eat bread and/or gluten. AutoImmune is hard to get a definitive diagnosis on, there are so many and they overlap symptoms. Lupus is on the check list for me too.

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    2. I totally agree with all you've shared. For most, gluten is the cause of
      health issues. Healthy, whea products are not produced today and can be causing all sorts
      of serious reactions; on a loaf of bread, take the time and read the long
      list of ingredients. Most breads are full of junk.

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  3. My teen age daughter has had gastro problems for years. She's now on the Low Fodmap diet (look it up) and she's doing so much better! She's not allergic to wheat, but turns out that many Low Fodmap foods are gluten-free! So she essentially eats gluten-free and she's better than she's been in forever. Thanks for sharing your insight and story. xo Kathleen|Our Hopeful Home

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    1. Hi Kathleen, yes, I've read up on the FODMAP information. Basically this last two weeks, I've also been off all dairy (which I was already Lactose Intolerant), no sugar for a long time now, and realizing I may have a corn allergy also. so there goes that, too. I would have never put all these foods as one of the underlying problems with nerve pain and migraines, but when you start looking into it you see that it's very real. I wish more doctors were aware of the far reaching effects.

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  4. I read your blog regularly with hope your are getting better. I am amazed at your attitude and tenacity. Lets hope that this issue will start to unravel the mystery. It is beyond belief that anyone would say anything negative or mean to you. Just keep trying don't give up, you have many people on your team.
    Judy

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    1. Hi Judy, thanks so much for leaving a comment. You know there are a lot of people out there that feel threatened when people start talking about them changing their food and habits. They would rather be miserable than consider making changes. I've had to advocate for myself for so long it's crazy. I've had to be the one to do the research and then push for the doctors to hear and acknowledge that yes, this might be a problem.

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  5. I've been gluten free for going on 7 years after years of chronic stomach issues that doctors could never find a diagnosis for. I finally found a physician that knew how to test me. I've never felt better and I'm the healthiest I've ever been after going gluten free. Just beware, gluten is in more than just bread. It's shocking how many products its added into.....pasta, sauces, desserts, candy, shampoo, cheese, ice cream, toothpaste, etc. good luck with this journey.once gluten is completely out of your system, you will feel so much better.
    Cindy
    Edith & Evelyn Vintage

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    1. Hey Cindy, glad to hear you're having such good results going GF. Yes, all I've done this week is check labels and google products, eeeck shampoo? I have had to call all my medication manufacturers to check about the capsules, too.

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  6. My son was diagnosed with celiac disease at the age of 10, after years of nutritional deficiencies, misdiagnoses, slowed growth, at a time when hardly anyone had heard of celiac disease or gluten. GF food and products were hard to find and expensive when you had to special order them, but I was so relieved just to be able to stop his pain and the damage to his body, it was worth every $$$. Flash forward to today, he is a healthy 29-year-old, and can go into any grocery and/or most restaurants and eat gluten-free. I hope a GF diet helps you find good health and wellbeing as well, as you've had more than your share of issues to manage, very gracefully I might add!

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    1. Hi Heidi, almost 20 years ago, I wonder if it was harder to get the correct diagnosis than it is now. I don't think I even knew what Celiac Disease was back then. I'm so glad you all got an accurate diagnosis for your son, I think about all the problems my girls had, and the medical system seemed like they were still in the dark ages.

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  7. You've sure had it rough, Debra. It always surprises me when someone has the nerve to leave anyone a bad comment, but I get them too. So guess there are lots of "nervy" folks out there. Luckily I've never really had problems with food. Ironically though, I just started a Gluten Free Recipe board on Pinterest for those who do have problems with it.
    Brenda

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    1. I'll have to go check out your board, I did GF pasta this week, and it tasted good, but the texture was mushy. I'm going to have to get some tips on some new recipes. Yes, I was afraid I'd have some nay-sayers calling it a fad.

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  8. This is so interesting to me. I have severe eczema and know that can indicate other autoimmune problems. I am dealing with other issues and have just decided to begin a elimination diet to figure out if other things are causing a problem. My doctor did this two years ago and found out his migraines were caused by gluten sensitivity. He has been gluten free two years and has no more migraines.

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    1. Hi Christy, I used to have eczema really bad. all over my hands and up to my elbows, also on my feet when I was a teenager. NEVER did anyone say anything about food allergies or autoimmune. I hardly ever have a flare up now, but I've thought that it was probably because I was diagnosed with Thyroid issues, so the replacement hormone likely lessened the outbreaks. Glad to hear GF cleared up someone's else's migraines, I'm hoping that it's the big offender.

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  9. Boy have you ever caught my curiosity and attention. When I can buy another black ink cartridge will print out few more of topics from Gluten Free School.com,
    so glad you have shared your knowledge and experiences.
    I have a friend who had type 2 diabetes, she dieted, went to yoga religiously, went gluten free, had thyroid disease. She is no longer diabetic, lost tons of weight, feels so much better, still goes to yoga, she is a marvel. She mentioned gluten sensitivity to me few years ago since she knows I have been hypothyroid since birth.
    Have to admit thought was a trend but after careful thought and looking into the subject realize gluten sensitivity is not just a trend.
    There is so much to learn but am going to stick with educating myself so perhaps I can be healthier in my older years. Will be 77 next month, as I mentioned have had hypothyroid since birth.
    Certainly hope your quest for knowledge helps you and going gluten free is process which helps you immensely. Have wonderful weekend

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    1. thanks so much for leaving a note on this. Hope you can gain some insight for your own health. I really had an inaccurate understanding of it all, and we really can't depend on our doctors to be initiating the conversation. Happy weekend!

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  10. I would just like to pass along a concern for any of your readers who consider going gluten-free... Please if there is ANY chance of it being Celiac, do NOT go gluten-free until you rule it out. (Celiac loves to accompany other autoimmune diseases.) The reason is that if you are tested for Celiac after being gluten-free your tests will be negative even if you have the disease. If you give it up and find that gluten is your issue and then want to see if it is Celiac then you must eat it for weeks before you can get a correct diagnosis. Rule out Celiac first and then feel free to see if you have an intolerance/sensitivity after the results are negative. (Not all doctors know this.) I made that mistake and putting it back into your diet after you find out it is an issue is H-E-Double Hockey Sticks. ;)

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    1. yes, good point Dee. As I said Celiac Disease is something so much worse. I wasn't dealing with that issue, but more major sensitivity/intolerance. I couldn't wait a week to find out, I felt like the top of my head was going to blow off. When you live in the world of migraine and neck pain, you wait for months for someone to give you an appt. let alone order a test for something they see no correlation with. Sorry you had to go through that time of adding it back into your diet. They would have to force feed me to go back on gluten.

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