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Cboray

Looking for answers - docs are clueless

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I have been trolling this forum for some time now, convinced that I have Celiac Disease. I’m impressed with all of the knowledge so many of you have on so many things relating to this disease. At this point I’m desperate for answers and am hoping someone can give me some direction. I apologize in advance for my very lengthy post.

Last summer was a stressful time for me. My job was more stressful than usual and my elderly mother, who had mild dementia, had a bad fall and it increased her dementia tremendously. To keep from her having to go into a nursing home, I had to find 24/7 care for her and, to keep costs down, I was caring for her in her home from Friday night to Sunday night every week, in addition to working full-time.  Needless to say, my stress level was out of control.

About this time I had a really bad reaction when eating shrimp at home. I broke out in hives with severe itching and had a tightening feeling in my throat. I downed several Benadryl and recuperated fairly quickly. I also started having severe joint pain in my ankles and feet, making it hard to even walk because of the pain. I was also having a lot of hair loss and severe insomnia.

I went to see my PCP with the complaints of the shrimp episode, the joint pain, fatigue, hair loss and insomnia. I had been seeing her for about 10 years, always with the same complaints – frequent infections, fatigue, insomnia, back pain and joint pain. She’d give me antibiotics for the infections, sometimes steroids, send me to physical therapy for the back and joint pains, and occasionally give me Ambien for the insomnia, although at one point she put me on an antidepressant, but that never helped.  At this appointment she referred me to an Immunologist for the shrimp episode and did x-rays for the joint pain and said they were normal. She gave me a prescription which she said should help with the fatigue, hair loss and insomnia but didn’t say what it was. When I picked it up from the Pharmacy I asked what it was and was told it was an antidepressant. I pitched the pills and ditched the doctor cause I knew my issues were much more than depression.

I went to see the Immunologist and, after much blood work, he diagnosed me with Common Variable Immune Deficiency (CVID). While I was waiting on the results, I had 3 episodes where I actually fainted immediately after eating, twice at a restaurant and once at a cook-out. The doctor said I probably had some unknown food allergy, since all of the food allergy testing he did on me was negative. I made an appointment with a Rheumatologist on my own and he diagnosed me with Sjogren’s Syndrome (SS).  Because of the CVID and my lack of antibodies, my blood work was negative but a lip biopsy confirmed the diagnosis. Finally, I thought, I had a reason for all of the issues I had been having for so many years. I feel like the diseases were always there, but the severe stress just made everything blow up on me. In December I started weekly at-home infusions of Hizentra for the CVID and started taking Plaquenil for the SS.

In January I started losing weight and having a lot of diarrhea. My weight at the time was 130 lbs. and my current weight is 99 lbs. Even at only 5’ 2”, it’s much too low for me. I’ve gone from a size 8 in clothes to a size 0. Family and friends are constantly telling me how thin I look.

I went to a new PCP doctor and he referred me to a Gastroenterologist for a colonoscopy. That was done and the results were fine. At the follow up, I was continuing to lose weight, so he performed an Endoscopy. He said the results showed reflux and gastritis and that’s what was causing my weight loss.  He told me to take Iberogast, which didn’t help at all. Meanwhile, still losing weight and still feeling bad, I went to my Oncologist for my annual follow-up for breast cancer I had in 2009.  Blood work revealed my liver enzymes were highly elevated and she was concerned. She ordered an MRI which showed I had a few gallstones and a .05 cc cyst in my pancreas but the report said the cyst was insignificant because of its size and location. She referred me back to the same GI. He performed an MRCP and inserted a temporary stint into my bile duct. My liver enzymes have come down but are still slightly elevated. At that follow up, still losing weight, he decided the reason for my weight loss was my gallbladder and it needed to be removed. He referred me to a surgeon but I was concerned because I’ve never had gallbladder type pain and didn’t want to have my gallbladder removed if that wasn’t it, so I went to another GI for a second opinion. That was a mistake because that guy just raved about the other doctor and said if he thought it was my gallbladder, then that’s what my problem was. I went ahead and had it removed about 3 weeks ago. Guess what? Still losing weight!

It’s not just that I’m losing weight. I don’t feel good!!! I have all of these symptoms – severe fatigue, chronic back pain, neuropathy, insomnia, hair loss, chronic diarrhea, brain fog, constant headaches, and joint pain. I was also diagnosed fairly young with osteoporosis. My eyes are always bloodshot and I often have really bad dark circles under my eyes. People often comment on my bloodshot eyes and often tell me I look “tired.” I know some of these symptoms overlap with CVID and SS, but those doctors tell me that the Hizentra infusions and the Plaquenil should give me relief from those symptoms. I have not had any new infections since starting the Hizentra. I definitely notice an increase in my symptoms when I eat a high gluten meal.

I’ve suspected that I could have Celiac Disease for some time. I asked the GI doc to do blood work and reminded him that I’m IgA deficient. I also asked him, before the Endoscopy, if he would do biopsies for Celiac. He said it wasn’t necessary because my blood work was negative and seemed irritated that I would even ask.

Here’s the results of my blood work:

Results do not support a diagnosis of Celiac disease.

Celiac disease unlikely if patient is on a gluten-containing diet and is IgA sufficient (which I’m not due to my CVID).

Celiac Risk Haplotype Not Detected:

One allele (HLA DQA1*05) of DQ2.5 haplotype detected.

HLA DQB1*02 not detected

Deamidated Gliadin Peptide Antibody, IgG (DGP IgG)                          0.6 EU/ml (Ref. Range <4.9 EU/ml)

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA)                  <0.1 U/ml (Ref. Range <10.3 U/ml)

Anti-Endomysial IgA IFA (EMA IgA)                                                           Negative (Ref. Range Negative)

Total Serum IgA by Nephelometry (Total IgA)                                        41 mg/dl (Ref. Range 44-441 mg/dl)

The doctor never bothered to go over these results with me and I had to request copies from Med Records. I searched Google for help in deciphering it all but have had no luck. To those of you that understand all of this – is there any chance I could have Celiac Disease? It appears I have one gene (?) so, is that enough to have Celiac?

I refuse to go back to the GI I’ve been seeing for 9 months. I want my gallbladder back, but that ain’t gonna happen. GI’s in my area are limited and none seem to have expertise in Celiac. In the last two weeks I’ve seen the PCP, who said he doesn’t have a clue since the GI can’t find a reason. I’ve seen the Immunologist who feels that my CVID isn’t the cause of the weight loss or other symptoms. I’ve seen the Rheumatologist who feels that I may have a malabsorption issue and referred me to an Internal Medicine doctor. That doctor didn’t think it was malabsorption but suspected some type of bone marrow cancer and referred me to my Oncologist, who said no, it’s not cancer. She wants me to go to the Cleveland Clinic and see a specialist. Cleveland Clinic is about 6 hours from where I live but I'm willing to go anywhere to get some answers. Her nurse made the appointment but I can’t get in until March. The doctor has called that doctor several times to see about getting me in sooner but the doctor will not return her call.

I can’t wait until March to find out what’s wrong with me. At this rate, I’ll be down to 80 lbs. by then. I’m afraid I’m going to get to the point where I have to go on IV nutrition. I don’t want to go gluten free now, although I am limiting my intake considerably, because I want to be on gluten if and when I have testing done. I couldn’t continue working full time with all of my health issues so I took early retirement and went back to work in another division part-time. I’m having a hard time even working part-time with the way I feel, plus having constant doctor’s appointments and recuperating from surgery. At this point, I’m desperate for help. Any advice or suggestions you can give me would be greatly appreciated!!!

 

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Hi Cboray,

Welcome to the forum! :)

I hope we can help you.  I found some info on CVID on Wiki that might explain some of your symptoms.  See the bold section of text below.  They (WIKI) say that CVID can cause celiac like symptoms.  But the symptoms don't improve on a gluten-free diet.  I found it interesting that they say CVID can lead to Hashimoto's Thyroiditis and other autoimmune conditions and malabsorption effects including anemia.  Those issues are associated with celiac disease also.

I hope the doctors have checked you for hashimoto's thyroiditis, or at least checked for low thyroid or high thyroid hormone levels.  Thyroid levels being off can really affect our bodies in many ways, including weight loss and depression symptoms.  Thyroid hormones are easy to replace though so there is no need to suffer with symptoms from Hashimoto's or other thyroid issues.

It seems one issue CVID can cause is low stomach acid.  Some people take a teaspoon of apple cider vinegar in cup or glass of water and say that helps.   There are also Betaine HCL capsules, which are supposed to make stomach acid.  Either of those might be worth trying for awhile.

I can say that I think it is worth trying the gluten-free diet.  You may not get a diagnosis because your immune system doesn't make high enough levels of the immune cells to detect by current test methods.  I suppose an endoscopy may have show celiac like damage but without immune markers on a test they probably won't diagnose celiac.

The gluten-free diet can have benefits anyway though IMHO.  None of us really digest gluten protein, it's a non-soluble fiber so it isn't digested.   If you decide to try the gluten-free diet, please go for a whole foods approach.  Eating whole foods reduces the man made chemical load on our livers and reduces the number of preservatives, food colorings, and other additives in our food.  That may have benefits by itself.  Some people suggest eating well cooked veggies to make them easier to digest also.

I find Pepto Bismol to be soothing when  my gut is reacting.  I also like peppermint tea for gas.

One method of finding problem foods is an elimination diet.  The idea is to eliminate any foods that might be causing problems for a few weeks and then re-introduce them to see of symptoms change.  Some of the common problem foods are nightshades, soy, dairy, corn, gluten (wheat, rye barley), eggs, or any of the top 8 food allergens.  I have problems with celery and carrots as well as nightshades, soy, dairy, and caffeine.

I hope you find some answers. :)

********************************************************************

https://en.wikipedia.org/wiki/Common_variable_immunodeficiency

CVID

Signs and symptoms

The symptoms of CVID vary between people affected. Its main features are hypogammaglobulinemia and recurrent infections. Hypogammaglobulinemia manifests as a significant decrease in the levels of IgG antibodies, usually alongside IgA antibodies; IgM antibody levels are also decreased in about half of people.[5] Infections are a direct result of the low antibody levels in the circulation, which do not adequately protect them against pathogens. The microorganisms that most frequently cause infections in CVID are bacteria Haemophilus influenzae, Streptococcus pneumoniae and Staphylococcus aureus. Pathogens less often isolated from people include Neisseria meningitidis, Pseudomonas aeruginosa and Giardia lamblia. Infections mostly affect the respiratory tract (nose, sinuses, bronchi, lungs) and the ears; they can also occur at other sites, such as the eyes, skin and gastrointestinal tract. These infections respond to antibiotics but can recur upon discontinuation of antibiotics. Bronchiectasis can develop when severe, recurrent pulmonary infections are left untreated.

In addition to infections, people with CVID can develop complications. These include:

Anxiety and depression can occur as a result of dealing with the other symptoms.[6]

People generally complain of severe fatigue.[7]

********************************************************************

Atrophic gastritis

https://en.wikipedia.org/wiki/Atrophic_gastritis

Atrophic gastritis (also known as Type A or Type B Gastritis more specifically) is a process of chronic inflammation of the stomach mucosa, leading to loss of gastric glandular cells and their eventual replacement by intestinal and fibrous tissues. As a result, the stomach's secretion of essential substances such as hydrochloric acid, pepsin, and intrinsic factor is impaired, leading to digestive problems. The most common are vitamin B12 deficiency which results in a megaloblastic anemia and malabsorbtion of iron, leading to iron deficiency anaemia.[1] It can be caused by persistent infection with Helicobacter pylori, or can be autoimmune in origin. Those with the autoimmune version of atrophic gastritis are statistically more likely to develop gastric carcinoma, Hashimoto's thyroiditis, and achlorhydria.

Type A gastritis primarily affects the body/fundus of the stomach, and is more common with pernicious anemi

a.

Type B gastritis primarily affects the antrum, and is more common with H. pylori infection.

********************************************************************

 

 

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Thank you for your reply!

My thyroid levels have been checked several times and are always normal.

My CVID doc always blames my issues on SS and my SS doc always blames my issues on CVID. Neither seem to really understand the other disease. I wish I could find someone that's familiar with both.

I will try the apple cider vinegar and see if that helps and check out the Betaine HCL capsules. I assume I can get those at a health food store?

I think I will try the gluten-free diet just to see if there's any improvement. At this point I feel like I have to do something instead of just sitting around, wasting away,  waiting for my appointment in March. I tend to eat pretty healthy -- a lot of fruits and vegetables, salads and mostly baked chicken or fish, but I do love my bread. Would rather have that than chocolate. :( I've done some reading on CVID related enteropathy today and there's not much info out there, but I have an appointment soon with the Immunologist and I'll definitely discuss it with her.

Thanks for your help!

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Hi Cboray,

You should be able to find Betaine HCL at health stores.  Or online at places like Vitacost and many others.  The big river company probably sells it also.

You can get gluten-free bread, like UDI's or others at some grocery stores.  I buy Udi's sometimes, but mostly I use Mission brand corn tortillas as bread.  I eat Quaker brand rice cakes also, some of them are marked gluten-free now.  Somewhere on the forum is a thread on making microwave buns that has recipes also.  It was started by a member called lonewolf some years ago.

It sounds like you eat a pretty good diet, except for the stinkin' bread! :)  If you want to try the gluten-free diet, please give it 3 to 6 months for results.  Results can include any change in symptoms.  Some people feel better in a week or 2, others take much longer to recover and heal their gut.

Celiacs tend to not absorb fat soluble vitamins, so those are a good thing to have your doctor check.  We also tend to have problems with dairy (lactose intolerance) due to the damage to the villi.  The villi lining in the small intestine produces an enzyme that breaks down dairy sugar( lactose).  Without the villi we become lactose intolerant.  After a person heals a while, they can sometimes digest dairy sugar again.  Some people never have a problem with dairy though.

There have been other members with Sjogren's disease post about it on the forum.  Maybe you can search for Sjogren's on the forum and find some threads.

I suggest you give your immunologist a heads up that you want to check on the CVID related enteropathy.  Give them a little time to research it some.

Hashimoto's thyroiditis and Sjogren's are both associated with celiac disease also.  Since your thyroid levels are good though Hashimoto's shouldn't be a concern.

Here's a list of some associated/related diseases.

http://www.celiac.com/categories/Celiac--Disease--____--Related--Diseases--and--Disorders-c-3344.html

 

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I did pick up some UDI's bread but haven't tried it yet. Been eating gluten-free all week but we eat out a lot. Had a Cobb salad with chicken from Panera's tonight & didn't feel so good afterwards. Guess I need to start worrying about cross-contamination. They handle so much bread there & I'm sure they don't change gloves often. Found out there is a gluten-free bakery nearby so will have to check it out. Guess I'm going to have to start cooking more often.

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5 hours ago, Cboray said:

I did pick up some UDI's bread but haven't tried it yet. Been eating gluten-free all week but we eat out a lot. Had a Cobb salad with chicken from Panera's tonight & didn't feel so good afterwards. Guess I need to start worrying about cross-contamination. They handle so much bread there & I'm sure they don't change gloves often. Found out there is a gluten-free bakery nearby so will have to check it out. Guess I'm going to have to start cooking more often.

I am a fan of Cayon Bake House gluten-free bread. They sellbit at my Costco and Target. I never liked Udis. 

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Cboray,

I agree with GFinDC.  Find you some BetaineHCL capsules.

I suggest starting with 3 or 4 capsules at a time.  Some people need as many as 6 at a time but you can usually count down to one if you have a "warm sensation" in the area of your stomach after you get used to the sensation you will know what to expect.  If it gives you heartburn bump it up another capsule or two.  If it burns like someone is putting out a cigarette in your stomach reduce the amount or eat something.  If it goes away when you eat more food you have reached the upper limit of good/healthy acid level.

People usually don't have to take them forever just for a while until they stomach is able to produce it's own acid again.

All the stress you have had could of made you low or already aggravated the condition and made it worse.

See this link from Dr. Dana Myatt or search for "Gastric Function Test" and she explains how to self test for low stomach acid....

https://www.drmyattswellnessclub.com/GastricAcidFunction.htm

It involves taking BetaineHCL capsules.

Quoting Dr. Myatt she says

"You can perform a gastric acid self-test at home using some betain HCL capsules taken with meals. If digestion improves - bingo! You’re hydrochloric acid deficient. If you did not have any digestive complaints but you don't feel anything with added HCL, it is highly likely that you have a stomach acid deficiency and would benefit from taking betain HCL with meals.

This issue of low stomach acid is central to so many diseases that I recommend a gastric acid self-test to EVERYONE over age 50 and anyone under age 50 who has any medical complaint related to nutrient deficiency."

See her page again on low gastric function https://www.drmyattswellnessclub.com/GastricAcidFunction.htm

and notice some of the diseases associates with low gastric function aka low stomach acid.

If you get a burning sensation between meals (that goes way when you eat something) cut back on the number of betaineHCL you are taking because you have over done it and your stomach acid is too high.

Otherwise it is certainly worth a try. 

**** this is not medical advice but it did help some of the GI problems I was having.

I don't take BetaineHCL now but I did for a while and many of my GI problems are now better.

And I hope it helps you  and you will let us know if it does.

Posterboy,

 

 

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Hi,

My thoughts:

  • I am sorry to hear about your situation. And I am sorry about your mom. A fall can increase mental stress, and that stress can decrease cognition, that is for sure.
  • Your physician, like most, is not curious about your situation, for better or worse. That is going to be your job, and it sounds like you are. Great! Does your doctor work with a nurse and does that nurse do any patient education or research? Your doctor likely works in 15 minute increments and has no time for curiosity.
  • Wow, so the doc would not do a biopsy of the SI in spite of him going ahead with an endoscopy. What a waste! I would be furious.
  • You say your total Serum IgA by Nephelometry (Total IgA)                    41 mg/dl (Ref. Range 44-441 mg/dl). That is low, as you correctly picked up on. The celiac blood test panel includes the total serum IgA test because some people (3%) are IgA-deficient. If you have a very low total serum IgA, that can invalidate the three blood tests that rely on your IgA levels. People with celiac disease suffer from low total IgA levels about 10 to 15 times more frequently than people in the general population.
  • Her nurse made the appointment but I can’t get in until March. Keep it, and continue on with what you are doing. If you make enough progress, you can cancel it, right? Just keep the appt.

My final question is why are you losing weight? I mean, are you just not eating as much or are you having diarrhea or are you vomiting?

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Thanks everyone for your responses. Tomorrow will be one week since going gluten-free and the last two nights I've had 0 neuropathy pain, which is amazing! I just hope it keeps up.

Plumbago - Sadly, my mother passed away at the beginning of summer. Since then, my stress level has decreased dramatically, so I don't think stress is a factor in my weight loss.

The GI doctor that I have been seeing for the past 9 months has a Physician's Assistant that I mostly saw. She's only been out of school 2 years and I think she lacks experience and knowledge to deal with my problem. She would talk to the doctor after seeing me and then call saying he wanted to do some procedure. I saw the doctor immediately before and after each procedure and each time he had some reason for the weight loss. A surgeon removed my gallbladder but I did have a follow-up with the GI doctor afterwards and he said the gallbladder was causing the weight loss and I should see an immediate improvement.  Won't be going back to him.

The weight loss is my biggest concern.  I'm losing a average of 1-2 lbs/week. My appetite is fine.  I have no vomiting. I do have frequent diarrhea, not every day, but frequently, usually 15-20 minutes after eating. My doctor prescribed Colestid for it. It's a cholesterol-lowering drug but evidently is also used for diarrhea and has something to do with bile acids. Don't think it's helping anything though. I tried eating much larger than usual meals to gain some weight but found that after eating large meals I would have extreme fatigue, sometimes having to lay down and sleep for a couple hours afterwards. Anyone else have this as a gluten symptom? I'm now eating smaller but more frequent meals and snacking a lot on things like fruit, yogurt, carrot sticks, popcorn....... I don't know what else to do at this point. :(

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On 11/8/2016 at 9:19 AM, GFinDC said:

I hope the doctors have checked you for hashimoto's thyroiditis, or at least checked for low thyroid or high thyroid hormone levels.  Thyroid levels being off can really affect our bodies in many ways, including weight loss and depression symptoms.  Thyroid hormones are easy to replace though so there is no need to suffer with symptoms from Hashimoto's or other thyroid issues.

I thought hypothyroidism involves weight gain, not loss. Hyperthyroidism involves diarrhea and weight loss and can turn into a medical emergency.

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On 11/8/2016 at 4:59 AM, Cboray said:

I’ve seen the Rheumatologist who feels that I may have a malabsorption issue and referred me to an Internal Medicine doctor.

If you've got diarrhea a lot, sure sounds like you've got malabsorption going on.

On 11/8/2016 at 4:59 AM, Cboray said:

The doctor never bothered to go over these results with me and I had to request copies from Med Records. I searched Google for help in deciphering it all but have had no luck. To those of you that understand all of this – is there any chance I could have Celiac Disease? It appears I have one gene (?) so, is that enough to have Celiac?

Genetic Testing. People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 25-30% of all people. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease nor does it mean you will ever develop celiac disease.

https://celiac.org/celiac-disease/understanding-celiac...2/diagnosing-celiac.../screening/

How are your other labs. Have you gotten the full array of lab tests done? Anything abnormal, anywhere? Have you noticed times when the symptoms abate (diarrhea) and you are not losing as much weight? If so, tell us about those times.

I would say it's natural to feel tired after large meals. As for sleeping 2 hours, that's a different story, and honestly I have no idea if it is significant or not. I do not know anything about CVID, so I can't comment. I'm so sorry about this - my advice is to keep reaching out, and to medical personnel as well, you may just spark their curiosity enough that they go home and devote 2 hours of research on it. Otherwise, just keep an ear out for bright GI specialists.

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1 hour ago, plumbago said:

I thought hypothyroidism involves weight gain, not loss. Hyperthyroidism involves diarrhea and weight loss and can turn into a medical emergency.

My hubs was hypothyroid. He took synthroid for 20+ years. He was ALWAYS underweight - grossly underweight. Guess what? After dx & being gluten free for a while, he quit taking the synthroid & over a year later got a full, complete thyroid panel done. Numbers couldn't be more perfect. No more hypothyroidism. It was celiac all along.

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1 hour ago, plumbago said:

I thought hypothyroidism involves weight gain, not loss. Hyperthyroidism involves diarrhea and weight loss and can turn into a medical emergency.

I have Hashi's (dx 1997).  During my final year of menopause (when I was diagnosed with celiac disease at the same time), my thyroid was swinging like crazy from hypo to hyper.  My weight was never affected in all the years of having Hashi's.  Hyper, I was hot (not a hot flash, but wearing shorts in winter...okay winter in California?).  Hypo, I was cold (bought some flannel nightgowns and sometimes needed a nap?).  Drove my doctor crazy.  Finally stablized on the gluten-free diet.   Today, my nodules are gone and my thyroid is not enlarged.  But I still take Armour thyroid hormone replacement.  My thyroid was permanently damaged.  ?. Not sure if it was the gluten free diet (many thyroid sites recommend it), but I was probably able to calm down my thyroid by treating my celiac disease.

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@Cboray, temporarily, change your diet to nutrtionally-dense and easy-to-digest foods.  For me, that means homemade soups and stews.  Hard to digest a crunchy carrot, popcorn, or apple.  Cook them.  Consider digestive enzymes that are certified gluten-free.  

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4 hours ago, plumbago said:

I thought hypothyroidism involves weight gain, not loss. Hyperthyroidism involves diarrhea and weight loss and can turn into a medical emergency.

Right, hypothyroidism can lead to weight gain, depression, fatigue etc.  My comment wasn't about just hypothyroidism though.

Hyperthyroidism can cause the things you mentioned and also racing heartbeat, quick temper, irritability, facial flushing, and bulging eyes.

The thyroid has a big effect on our bodies.

Edited by GFinDC

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4 hours ago, squirmingitch said:

My hubs was hypothyroid. He took synthroid for 20+ years. He was ALWAYS underweight - grossly underweight. Guess what? After dx & being gluten free for a while, he quit taking the synthroid & over a year later got a full, complete thyroid panel done. Numbers couldn't be more perfect. No more hypothyroidism. It was celiac all along.

I am hearing more and more about the the connection between celiac disease and thyroid. On this site, there was a little article/ad for the program on tomorrow night - I subscribed and I think I will be getting a free preview. From what I've seen of it so far, it's heavy in promotion teaser mode and promises to morph into one of those PBS shows they use to raise money - to my mind, a little over the top in what is promised. But at the same time, you can learn from anything, and that's why I am going to watch it.

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I'll have to look for that plumbago.

I did mean to mention that the symthroid never made a single bit of difference in my husbands symptoms. Not one bit. That is why he was not afraid to go off of it for so long. 

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Cboray,

An easy home test for thyroid problems is to take your body temperature.  Our thyroids regulate our body temperatures.

If it is more than 1/2 point off in the evening either way their is a thyroid problem.

See this link from the NYtimes feature "Think Like a Doctor" that follows' a ladies diagnosis of a thyroid problem.

http://www.nytimes.com/2016/09/01/well/live/think-like-a-doctor-the-sick-traveler.html?action=click&contentCollection=Well&module=RelatedCoverage&region=EndOfArticle&pgtype=article&_r=0

This series is done in two parts first the symptom's then the answer/cure.  I think this is just part one the problems.

All these tests by experts and they missed it for two months because they went down the wrong road initially.  Her PCP found it one evening.

Just goes to show that our diagnosis can be difficult if our assumptions are wrong in the first place.

That is why I mention taking your temperature.  Most of the tests she endured could of been avoided if they had done this simple test.  And why  most doctor's always take your body temperatures historically.

Though I have noticed my doctors does not always take my temperature now and I think it curious that they don't knowing what they are/should be checking for.

1/3 of us will have a thyroid in our lives and many do get better on a gluten free diet.

But I have found that Iodine is good for my thyroid and Selenium (Brazil Nuts) have helped mine without the need for any medicine.

I hope this is helpful.

If you body temperature's seem to be irregular.

Dr. Chris Kresser has free e-book on thyroid problems.

Good luck and I hope your temperature is within a normal range.

Posterboy,

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3 hours ago, squirmingitch said:

I'll have to look for that plumbago.

I did mean to mention that the symthroid never made a single bit of difference in my husbands symptoms. Not one bit. That is why he was not afraid to go off of it for so long. 

Here's a link. I'm watching it so far, and it's annoyingly vague, but I will just have to wait until tomorrow night.

 

https://betrayalseries.com/sneak-peek-7p6wvsau

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50 minutes ago, plumbago said:

Here's a link. I'm watching it so far, and it's annoyingly vague, but I will just have to wait until tomorrow night.

 

https://betrayalseries.com/sneak-peek-7p6wvsau

Thanks! 

Okay, I watched that sneak peek. Not just vague but says absolutely nothing. Then I looked around the Tom O'Brian/Life Enthusiast site some. Money, money, money --- "Show Me the Money!" The Betrayal Series..... I'm not buying that either but I do thank you for the info. plumbago. I had not heard of that one before.

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8 minutes ago, squirmingitch said:

Thanks! 

Okay, I watched that sneak peek. Not just vague but says absolutely nothing. Then I looked around the Tom O'Brian/Life Enthusiast site some. Money, money, money --- "Show Me the Money!" The Betrayal Series..... I'm not buying that either but I do thank you for the info. plumbago. I had not heard of that one before.

They're heavy on the tease. As I say, it was advertised by the administrator on this site. It's supposedly going to tie the whole auto immunity thing together, but it doesn't say how, though  I've heard bits and pieces here and there that histamine  could be the big unifier, who knows. Well, it's free, and I'll watch. I think they've designed it at the front end to appeal to people who don't know much about how the body works but are suffering, to draw them in. 

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That's the thing..... the tease..... I deplore the tease. There is nothing that turns me off faster than the tease. It makes me turn the channel, close the tab, or walk out faster than you can say Jack Sprat. I might miss some good things because I get so disgusted with the tease but I guess that's just part of my personality.

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20 hours ago, squirmingitch said:

That's the thing..... the tease..... I deplore the tease. There is nothing that turns me off faster than the tease. It makes me turn the channel, close the tab, or walk out faster than you can say Jack Sprat. I might miss some good things because I get so disgusted with the tease but I guess that's just part of my personality.

Well, I'm listening and it's pretty much the usual. This one is priming us for.... functional medicine. Hey, that may not be such a bad thing, I can't really say. However, I get to about minute 35 and I hear a Brazilian doc explaining his first visit is one hour or an hour and a half. Stop the tape right there because if that is what it's about, we may just may be on to something. If anyone let alone a doc is going to spend so much time with an individual, the chances of getting treated well go up several tens fold. (Now, how this jibes with Obamacare and potentially extinct Obamacare is anyone's guess, and for sure we are going to need several thousand more docs if each one is going to spend so much time with a patient!)

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1 hour ago, plumbago said:

Well, I'm listening and it's pretty much the usual. This one is priming us for.... functional medicine. Hey, that may not be such a bad thing, I can't really say. However, I get to about minute 35 and I hear a Brazilian doc explaining his first visit is one hour or an hour and a half. Stop the tape right there because if that is what it's about, we may just may be on to something. If anyone let alone a doc is going to spend so much time with an individual, the chances of getting treated well go up several tens fold. (Now, how this jibes with Obamacare and potentially extinct Obamacare is anyone's guess, and for sure we are going to need several thousand more docs if each one is going to spend so much time with a patient!)

:lol::lol::lol::lol:

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