chocoholic

1 hour ago, Wheatwacked said:

Sorry, I said that poorly and did not mean any offense.

No worries.

2 hours ago, Wheatwacked said:

It's the Western Medicine mindset. "Not feeling well, yes we have a pill for that."

It is slowly becoming clear to me that each of the vitamins and minerals has a primary function, however our chromosomes were programmed with if-then clauses to compensate for environmental variables. If enough choline (liver, eggs, red meat) is not available our cells can substitute other similar vitamins (folate, B12, B5) to pick up the slack. Perhaps not as efficiently so that there are side effects; but well enough to complete the primary goal: Life.

Our bodies also have incredible recycling programming to compensate for poor availablity of certain critical nutrients.

I think the reason my D went from 45 ng/ml in Sept 2018 to 87 ng/mg in Sept 2021, all the time taking 250 mcg D3 a day (10,000 IU) since Feb 2015 was that I supplemented 1000 mg phosphotidyl choline starting in Feb 2020 (choline needs to be processed by the liver to become phosphotidyl).  During that time I also made sure that all my trackable vit and min were above 100% DV so it is impossible to point to one specific with anything more than hubris.

Not sure what you mean regarding 'western medicine mindset and a pill for that'. I was taking folic acid as a precautionary measure in case I do get pregnant. I didn't think it would reverse any of my symptoms.

19 hours ago, knitty kitty said:

I don't know if you understand what I was trying to say.  

MCV is Mean Corpuscular Volume.  It's a measure of red blood cell size.  

In anemia, the MCV increases.  The cells become large and are called macrocytic because of a deficiency in B12.  

If one is supplementing with folate while one has a deficiency in B12, the change in red blood cell size from normal to macrocytic does not occur.  The MCV remains normal.  This is the folate masking the B12 deficiency. 

Another test for B12 deficiency is the Methylmalonic acid test.  And testing for antibodies against the intrinsic factor.  

A more accurate test for thiamine deficiency is the erythrocyte transketolase test.  

Why were you supplementing with just only folate?

 

Thanks for explaining. I was taking only folic acid because where I live the B complex products are dosed very low, so I didn't bother. I've only been taking folic acid for about 8 months though and my symptoms have been the same for decades. I used to take sublingual B12 (methylcobalamin) for about 20 years before taking a break since my blood level was always normal. Then a while into my break, my B12 was sky high. I thought it could be related to my liver.

On 11/21/2021 at 2:46 PM, knitty kitty said:

@chocoholic,

Have you had any investigation into pernicious anemia?

Folic acid supplementation prevents one sign of B12 deficiency, extremely large red blood cells (megaloblasts).  

Pernicious anemia occurs when the intrinsic factor needed to absorb B12 is not being produced by parietal cells in the stomach because they are being attacked by autoantibodies.  

"Anti-parietal cell antibodies - diagnostic significance"

https://pubmed.ncbi.nlm.nih.gov/26918709/

If there's a thiamine deficiency, then B12 levels can become elevated.  

B12 can be stored in the liver for a couple of years.  If there's a problem with the intrinsic factor and B12 can't be absorbed, the body would rely on the B12 stored in the liver until those became exhausted. 

That seems like a big drop in your B12 levels over a short period.  I'm not a doctor.  Just making an observation.   

Folic acid is synthetic.  It is used to enrich wheat products because it has a long shelf life.  Folate is the more bioavailable form.  I supplement with folate.  Perhaps a change to folate would be beneficial.

 

That's an interesting thought Knitty Kitty. My MCV is normal though (which is supposed to be high for pernicious anemia). I'll bring this up with my GP, although I doubt that she understands this. Normal blood levels, normal everything, she'll say...

On 11/21/2021 at 2:31 PM, Wheatwacked said:

What is your plasma vitamin D? I mentioned previously that there can be an inverse relation with TSH, ie low D causes high TSH. I also know from personal experience that raising D can relieve long term depression. I take 10,000 iu a day for the past 7 years and mine is only 87 ng/ml. My son, biopsy diagnosed as an infant (45 yr old now) works full time on the beach plenty of sunshine yet still tested last week with low D.   https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

You might try getting your folate from foods instead of folic acid

 

My vitamin D (25OH-Vit.D) is 36.4 (normal 19.1 - 72.0). I've been taking 10,000 IU (D3) daily for the past 2 years. Either I don't absorb more or it doesn't contain as much as it claims.

59 minutes ago, knitty kitty said:

"Other than this though, I have felt no improvement with my lethargy and exhaustion, headaches/migraines, major sleep issues, depression, kinked hair texture, super dry skin and general feeling ill."

 

@chocoholic,

I'm curious as to why you are taking only folic acid.  

Folic acid supplementation is known to mask B12 deficiency.  

B12 deficiency symptoms include many of the symptoms you mentioned above.  

B12 deficiency is common in Celiac Disease and hypothyroidism.

Here's an article that may be of interest.....

"Vitamin B12 and Vitamin D Levels in Patients with Autoimmune Hypothyroidism and Their Correlation with Anti-Thyroid Peroxidase Antibodies"

https://www.karger.com/Article/FullText/505094#top

"Patients with both hypothyroidism and vit-B12 deficiency also have similar symptoms. Symptoms such as fatigue, weakness, dementia, depression, memory impairment, lethargy, and tingling are frequently seen in patients with hypothyroidism and vit-B12 deficiency. Thus, vit-B12 deficiency may be ignored in hypothyroidism."

 

You might choose to get your B12 level checked, but you'll need to stop supplementing with folic acid for several weeks first.

Remember that the eight B vitamins all work together.  Supplementing just one of them may throw the others out of balance.  It's better to supplement all of the eight B vitamins.  They are water soluble and nontoxic.  

Hope this helps!

 

Hi Knitty Kitty,

my B12 was extremely high a year ago (1140 pmol/l, normal range 156-672). It is now 492.

5 hours ago, ShaunaTX said:

 

Per a previous reply to you, factors such as taking biotin, or a multivitamin with biotin in it, timing of blood draw, etc. will change lab results, and there are such things as false-positive and false negative results that's why labs may get repeated. Interestingly, there was a study that is linking anxiety to thyroid  inflammation and elevated thyroid levels. Also, TSH ranges vary depending on the labs. Some say normal is 0.5-5.0 others say 0.5-4.5. So your "such a high value" is not high at all. My TSH was 84 at baseline before being treated. I just saw a patient the other day with a TSH of 236, and my husband works in the lab and has seen a TSH over 700.

Either way, IF you had subclinical hypothyroid, it is not typically treated until a TSH over 10. This is due to the increase risk of conditions like atrial fibrillation and osteoporosis that comes along with taking thyroid hormones. Moreover, there is no sufficient evidence that there are fertility issues in women with subclinical hypothyroid, only overt hypothyroid. I just finished my women's health rotation, and the provider I was with informed many women that if they have regular menstrual cycles while off birth control, they can get pregnant!  One factor that most likely will affect you getting pregnant, is your anxiety. The what seems like unnecessary diagnostic tests (US/scintigraphy) unless a nodule was detected kind of encourages the anxiety. Also, the scintigraphy exposes you to radiation, even if it is in small amounts.

My suggestion... step away from the thyroid train and breathe! Because the overwhelming panic I am reading in your posts will not benefit you in anyway, and may only add to the chaos as anxiety can take a toll on the body! 

https://www.medicalnewstoday.com/articles/anxiety-disorders-are-linked-to-inflamed-thyroid-glands

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7022757/

https://www.ahajournals.org/doi/10.1161/circulationaha.117.028753

https://www.getroman.com/health-guide/long-term-side-effects-synthroid/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5961023/

https://www.webmd.com/baby/features/infertility-stress#1

Hi Shauna,

thanks for your comment. My blood tests were done at the same time of day and on an empty stomach (no food for 10 hours). The only supplements I take are iron, zinc, folic acid and vitamin D. Which I didn't take for 2 days before the blood test just in case.

I know that TSH values can run much higher in other people. I've read in many posts in family forums by women successfully receiving fertility treatment that according to their doctors, a TSH should not be higher than 1 in order to conceive and carry out a normal pregnancy. 

I've been having the same signs & symptoms for decades now. I'm 43. Just like it was with celiac, I know I am ill and would like to finally know what it is. I started investigating in my early 20s and have the lab tests to prove it. I have reason to believe I'm infertile, independent of any tests. And even when accepting that having children is not possible, I would still be feeling ill.

Yes, at this point I feel panicked and hopeless...why would I not after everything I've tried, and with no prospect of getting better? It's like being told not to be sad when that's how you feel. It doesn't work.

💔

In case anyone is interested, here are the findings of my recent blood test.

I picked up the doc's report from the front desk but haven't seen my GP yet.

FT3: 3.51 pg/ml (normal range 2.00 - 4.20pg/ml)

TSH basal: 4.91 mcU/ml (normal range 0.35 - 4.50 mcU/ml)

TPO: < 3 IU/ml (<5.61 IU/ml = negative)

He wrote that the normal TPO value means my thyroid is not or no longer subject to an autoimmune process. He mentions the raised TSH secretion and the according latent hypothyroid metabolism. He is not recommending any medication. Another blood test in 3 months. Ultrasound in 12 months.

I was so upset about this yesterday. 😰 First I'm told one thing, 3 months later another, and even this week he told me the TPO value is unlikely to change and that I'll be taking thyroxine.

Now I'm back to where I started! This is insane! And nothing to be done about my high TSH!? And how is such a high value conducive to getting pregnant? How can thyroid hormones vary to such an extent in such a short time?

Hi Gael,

I was diagnosed Aug. 2019 and gluten-free since. I've had an itchy scalp and dandruff since I was a teenager. I think there was an improvement while on 'the pill' (another topic, and I do NOT recommend taking BCP), but that was a long time ago.

I have had undiagnosed skin issues since childhood: bouts of a rash with hives all over my body (but only a few times in my life, including 3 years ago), localized rashes, extremely dry skin, inflamed scalp, and for a few years now a lupus-like red mask on my face.

Unfortunately none of this changed since my gluten-free diet, and I've been strict. No eating out ever, no "may contain traces of gluten" products that many celiacs consider safe.

My scalp is worst after eating, especially carb-rich foods. I find washing my hair daily helps somewhat (dandruff shampoo). Earlier this year I had my scalp, ears and other areas tested for fungus. Negative. (My inner ears are so dry and itchy it sometimes bleeds, it's horrible. Have seen the derm and an otolaryngologist about that, no answers.)

Other than that, after showering, my whole body itches, regardless of season, water temperature, personal products, laundry detergent etc.

Since I have a thyroid condition, this may be partly to blame. Perhaps also nutrition. 

I hope you'll find your answers soon. You'll probably need to do more tests to get answers. For many of us it's a long journey. 💛

Hi everyone,

I'll just write one comment instead of several individual replies for less clutter - hope that's ok. Thank you all again for your input and the effort you've put into researching. 💛

I had my appointment with a nuclear medical doc yesterday. Turns out a scintigraphy is only applicable in cases with tumors, so not for me.

My ultrasound was normal with some inflamed areas that the doc said were in themselves no indicator of hashimoto, as they also occur in healthy thyroids.

However, he said that even slightly elevated thyroid antibodies suffice for a hashimoto diagnosis and that I have it.

Since 3 months had passed since my initial blood test for this, he ordered a new blood test. He said he wouldn't expect the result to be any different now.

He said I'm in the early stage of thyroid decay and would prescribe 50mg of thyroxine depending on the new blood test result. He also asked me to quit using iodized salt (this has been a topic here). He also said that a biopsy is not done in the absence of tumors (contradicting what I have read).

I will report back once I have his report.

12 hours ago, Scott Adams said:

There is a ton of research that links thyroid issues, including some cases of Hashimoto's to celiac disease, which can be found here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/

I would not recommend going through a gluten challenge for long enough to try to create this issue. I'm not sure how long it would take, whether it would work, or the possible negative health effects you'd suffer by doing this.

 

Hi Scott, thank you for your reply and the link. I was aware of the correlation among various autoimmune diseases. I just haven't found research that shows APO decreasing with a gluten free diet in celiacs.

Contrary: one of your links states ("People with Celiac Disease Face Higher Risk of Thyroid Autoimmune Disorders" by Jefferson Adams):

"After treatment with a gluten-free diet, thyroid volume continued to decrease significantly in the patients with celiac disease compared with the control subjects, indicating the progression of thyroid gland atrophy regardless of the gluten-free diet. (...) Moreover, a gluten-free diet did not seem to stop or reverse the progression of autoimmune disease after one year."

Dear fellow sufferers 💛

In a previous posting, I described my current situation of being a diagnosed celiac (August 2019, gluten free since) who has recently received an iffy Hashimoto diagnosis.

Question: Have you ever intentionally glutened yourself (even ongoing) before bloodwork for Hashimoto in order to see if your TPO antibodies would rise to secure a more reliable diagnosis?

So far my TPO antibodies are the only thing that indicate hashimoto, and I can't speak to the doctor (endocrinologist) who issued the diagnosis. My GP has confirmed it to me but upon my request has also written a referral to nuclear medicine, which I will go to on Tuesday for probably an ultrasound and more blood work. The endocrinologist wanted me to have my level checked again 3 months later, so here I am.

Some celiacs claim that a gluten free diet decreased their TPO. Can anyone confirm this?

Thank you all so much for your comments - I apologize for not checking back in sooner...I've been having a very stressful time.

I'll be having my thyroid exam next Tuesday. So far it's not for certain what kinds of tests will be done, but most likely an ultrasound and bloodwork. Perhaps also a scintigraphy.

New question to you all: Would you consider it crazy to intentionally gluten myself to see if my thyroid antibodies go up in order to secure a more reliable diagnosis?

I may start a new thread on this subject.

19 hours ago, ShaunaTX said:

It’s because her thyroid peroxidase (TPO) is elevated.  I wonder now if an anti-TG was done… 
https://www.mayoclinic.org/thyroid-disease/expert-answers/faq-20058114

 

By anti-TG, I assume you mean what I know as TRAb? Then yes, I failed to mention it. It was <0.1 (normal reference range 0-1.5). A bit of a strange value then but apparently ok.

On 10/24/2021 at 11:17 AM, ShaunaTX said:

Hi there,

      I’m completely opposite from you, as I’ve had Hashimoto’s most of my life but was just diagnosed with Celiac 3 days ago. So I know a bit about it! I’m also in healthcare. Yes you have Hashimoto’s due to your elevated TPO, it would have been a lot higher if you were not gluten free. Honestly, I refuse to go to endocrinologists (which is the specialist you go to, but PCP can treat no problem-in your case just monitor) as I have been to 4 and they seem to not listen to me and my symptoms rather than just looking at lab ranges. I come from a long line of Hashimoto’s and we all know what TSH level we feel best at. Luckily my PCP is awesome and she listens to me and we try to keep my TSH where I feel best. I found going gluten free 4 years ago also helped me keep my thyroid levels mostly consistent. Although I was only gluten sensitive at the time so I was not as worried if I got cross-contaminated. Now I’m in panic mode with being Celiac.
 

Regarding your diagnosis, I would be more worried about Celiac than Hashimoto’s. Latent for you pretty much means you have it but your numbers (TSH and titers) are all in normal range. Numbers are normal so no treatment just monitoring. I get an ultrasound about every 4 years just to make sure there’s no thyroid nodules. But unlike you my TSH will go into 80s if I’m not medicated. 
Only other labs I would suggest to make sure they are all good are Vitamin D, B12, and folate.  Also have you had your ANA checked? If positive, you will mostly likely have a third autoimmune problem in your lifetime. I was just diagnosed with my third, but some people can have more than that.  Other than that relax, don’t stress about it!  I would concentrate more on your stress, insulin resistance and  Hypertriglyceridemia as those may be contributing to your symptoms.

Hope that answers some of your questions! 

-Shauna 

Hi Shauna, thank you so much for sharing! Congratulations on finally getting diagnosed (hope you know how I mean it). Why are you panicked about your celiac diagnosis? You have all this experience with the diet and now have official proof, which is worth a lot! Now you have more control over this thing in many ways. Was it straightforward to test positive despite going gluten-free for 4 years?

Thanks for reassuring me. I feel though that I have more control over celiac than this Hashimoto thing. I would like to do something about Hashimoto (take a medication although I'm generally anti-meds), but I can't since my values are "normal". I got an appointment with a nuclear medicine doc for November and will report back. Have you had a scintigram, since you mention nodules?

Thanks also for mentioning that my thyroid antibody values may have been higher 2 years ago at the time of my diagnosis. I have come across this theory in forums only so far. Hashimoto-celiac patients seem to have mixed experiences with their going gluten-free and their thyroid antibody levels. If you happen to have a study on this, I'd love to read it (haven't searched yet).

I have not had my ANA checked, will ask for it. What is your third autoimmune disease?

On 10/22/2021 at 4:48 PM, Wheatwacked said:

Just because I am on a roll, I would like to point out that it took years of convincing to get surgeons to wash their hands before operating.

Thanks for all your info. It's interesting that iodine can be tested in the urine...I doubt though that any doctors near me would do that, or even know how to go about it. I can try.

And yes, I see that many theories or observations are considered bogus by doctors for a long time until the mainstream gets there. Take my hair, for example. I still haven't met any doctor or real-life (non-internet-forum-based) person who sees my wiry hair even after pointing it out to them, or on themselves. Are they blind? And don't doctors see how common this is out there, if they observed people in public, or their patients? Hopefully someday it's an official symptom of something.

9 hours ago, Wheatwacked said:

 

If you are avoiding dairy, and not using iodized table salt, you are possibly iodine deficient. Iodine Deficiency can result in either Hashimoto or Graves. For iodine I eat one sheet 2.5 gm of shushi nori = 400 mcg iodine. The US RDA is from 125 to 1200mcg per day.

"Iodine deficiency, not excess, is the cause of autoimmune thyroid disease...In Japan, where dietary iodine intakes are high, it has been shown that ‘The incidence of Graves’ disease and Hashimoto’s disease does not appear to be affected by high intakes of iodine.‘ (5)...Evidence is also accumulating that iodine deficiency is able to precipitate thyroid autoimmune reactivity in humans.’   https://www.bmj.com/content/352/bmj.i941/rr-2

As far as trigycerides and energy: Look at your choline intake and B5 (Pantothenic Acid) . Eggs were the best source. 

Egg, hard boiled, 1 large egg 147 mg. US RDA is 550 to 3500 a day.

It takes about 3 eggs a day for the minimum RDA.  B5 is the precurser for CoA which is the catalyst for releasing ATP (energy) from glucose. It is the basis of all life.  Most research money has been spent on Pantothene, well, Pantothene can be profitably marketed and B5 Pantothenic Acid cannot. My triglycerides have gone from 595 mg/dl in 2018 to 295 mg/dl in Sept 2021 while taking 1000 mg B5 and 500 Choline or Phosphotidyl Choline. When I had pancreatitis in 1995 my triglyceride was off the charts over 10,000.

"Plasma choline levels do not decline below 50% of normal, even in individuals who have not eaten for more than a week ...Although most people in the United States consume less than the AI of choline"   https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

" a [B5] deficiency is associated with numbness and burning of the hands and feet, headache, fatigue, irritability, restlessness, disturbed sleep, and gastrointestinal disturbances with anorexia...When someone has a pantothenic acid deficiency, it is usually accompanied by deficiencies in other nutrients, making it difficult to identify the effects that are specific to pantothenic acid deficiency... A double-blind trial in China randomly assigned 216 adults with hypertriglyceridemia (204–576 mg/dl) to supplementation with 400 U/day CoA or 600 mg/day pantethine [21]. All participants also received dietary counseling. Triglyceride levels dropped by a significant 16.5% with pantethine compared"   https://ods.od.nih.gov/factsheets/PantothenicAcid-HealthProfessional/

 

".urinary iodine levels decreased by more than 50% between 1971–1974 and 1988–1994 [2,32]. Much of this decline was a result of decreased levels of iodine in milk due to the reduced use of iodine-containing feed supplements and iodophor sanitizing agents in the dairy industry [33], as well as the reduced use of iodate dough conditioners by commercial bakers. ..most salt intake in the United States comes from processed foods, and food manufacturers almost always use non-iodized salt in these foods....Urinary iodine reflects dietary iodine intake directly because people excrete more than 90% of dietary iodine in the urine [...Typically, TSH secretion increases when iodine intake falls below about 100 mcg/day [5]. TSH increases thyroidal iodine uptake from the blood and the production of thyroid hormone. However, very low iodine intakes can reduce thyroid hormone production even in the presence of elevated TSH levels..."   https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

Hi Wheatwacked,

thank you for your reply and all the information you went through the trouble to find for me.

I haven't been avoiding dairy; I eat lactose free products. I use iodized salt. I don't know if there is a way of getting this tested; I've never heard of it being in a blood panel.

Of course B vitamin deficiencies are always a possibility but I had the same symptoms even when taking larger doses of them...

2 hours ago, icelandgirl said:

Hi Chocoholic!

Love the name as I am a chocoholic too!😀

I also have Hashimoto's and celiac...welcome to the club!  

If you can find a good endocrinologist, go with that.  If not, in most cases, a GP can take care of your thyroid as well.  My endocrinologist recently retired and I was pretty upset because he really got it. He had thyroid cancer and full thyroid removal so really understood how the medications affect the thyroid.  

I received my Hashimoto's diagnosis with similar results although I had been considered hypothyroid and on medication for it for years.  It wasn't until 7 years ago that this new endocrinologist checked my antibodies and sure enough I had them.

Based on your results, I would say that you are in need of some thyroid meds and I also know that your Dr may not agree.  My TSH feels best around 1...or slightly below 1.  At your level I would be tired, have headaches, etc.  Your FT4 is a bit low as well.  A small amount of thyroid replacement medication would most likely do wonders for you.  A lot of Drs go only by the range and you are in the range on the values...find a Dr who goes by how you feel.

I'm sorry that you are still struggling and I hope you get some help and answers soon!

Hugs!

 

Thank you so much, Icelandgirl, for your caring reply! Yes, I'm a chocoholic (used to be funny, now it's pretty bad ) which no doubt has contributed to my triglyceride levels.

Thanks for sharing your impressions. I'm very open to taking thyroid medication and I'm curious how I'd be feeling. What and how much do you take?

Have you by any chance experienced an unusual change of hair texture as well?

2 hours ago, trents said:

Why does your doctor say you have Hashimotos when your thyroid panel numbers are all within normal range?

Almost...as Icelandgirl wrote, the TPO is technically above normal. But when I read the values that Hashimoto patients have (high in the hundreds), then mine seems completely negligible.

Hi everyone,

I've posted here before about my celiac diagnosis (Aug 2019). Now I'd like to add that in April this year, I had a follow-up endoscopy, so 20 months after my initial one.

The result was a normal villi architecture with an increased lymphocyte count, which I was told was "normal". I thought I'd share this in case other people are wondering about possible timelines with regard to tissue healing.

So far so good.

I take the gluten-free diet very seriously and found my intestinal symptoms mostly going away. There is still some permanent bloating, as well as diarrhea when I try dairy containing lactose. So I asked for a lactose and fructose tolerance test, but this has been delayed because of covid.

Other than this though, I have felt no improvement with my lethargy and exhaustion, headaches/migraines, major sleep issues, depression, kinked hair texture, super dry skin and general feeling ill.

An endocrinologist has (for the first time) included thyroid antibodies in one of my blood tests: TPO is slightly above the normal limit (my value 62.3 IU/ml, range 0-60).

My TSH is 2.18 mIU/l (range is 0.55-4.78). My FT3 is 3.21 pg/ml (range is 2.3-4.2). My FT4 is 1.02 (range is 0.81-1.76).

I also have very high triglycerides of 259 mg/dl (normal is <150).

My HOMA index is 3.2 (range is 0.5-2.5).

(My TSH, T3 and T4 had been tested many times throughout the years but were always considered normal).

He has diagnosed me with latent autoimmune thyroiditis and slight insulin resistance.

I only have all this in writing from the front desk, as only the GP is the one supposed to talk to me about the results. She did, and she told me I have hashimoto. I asked her 3 times if she's sure (I thought latent means it hasn't emerged yet), she said yes.

I am confused to have received such a full-fledged diagnosis based on my lab results and asked her for a referral to another specialist for more tests. She advised against a scintigraphy (done intravenously where I live) but referred me to a nuclear medical place for an ultrasound (which they do too).

For those of you who have hashimoto, could you please share your knowledge on these questions?

1. What kind of doctor would you recommend I see? What kinds of tests should I do?

2. Have you received your diagnosis based on results similar to mine? Is it reasonable to diagnose thyroiditis based on these values?

3. Is "latent" just as serious as regular hashimoto...is it actually already there or just 'around the corner'?

I know about the layperson-no-doctor part...only your experiences and impressions would do. I'm really despairing over doctors once again 😰

On 3/6/2021 at 8:26 PM, Zladyboss said:

Yes I am waiting. I seem to have the very itchy rash associated with celiac as well as lovely bloated stomach 

My skin has been very problematic for the past 5+ years. Extremely dry and itchy to various degrees. Today I was at a specialist to check my ears for an infection because they get (one more than the other) insanely itchy every day. He said there definitely is no infection or other abnormality; they are just very dry inside.

The skin of body parts/areas is also affected, and my scalp being highly problematic without a known infection (a derm tested me). But the symptoms don't match the photos online of D. Herpetiformis. So I'm guessing that no doctor would say my skin issues are linked to my celiac.

I also have "hay fever" / pollen allergies quite severe starting each February.

Overall, my immune system seems to be constantly busy for different reasons.

On 3/5/2021 at 5:15 AM, knitty kitty said:

Oy!  The colonoscopy prep will wash out some of the bacteria in your intestines. So you went from looking six months gone to only four.  

Small Intestinal Bacterial Overgrowth (SIBO) is often associated with bloating.  It's more likely your intestinal bacteria are partying and raising a ruckus when you consume fructose and sucrose than you having a fructose intolerance.  

The Autoimmune Paleo Diet will starve out these undesirable bacteria, allowing more beneficial bacteria to repopulate your intestines.

Probably not a fungus.  Candida albicans is a yeast overgrowth that can occur, but since you don't mention having UTI's, probably not that either.  Anyway, the AIP diet will help get rid of those, too.  

The AIP diet is wonderful at reducing inflammation and that bloat and encouraging good bacteria.

"Persisting changes of intestinal microbiota after bowel lavage and colonoscopy"

https://pubmed.ncbi.nlm.nih.gov/27015015/

 

Thank you, Knitty Kitty, yes...SIBO...I read about this here in the forum when I was diagnosed with celiac but kept living in a state of denial that this would really concern me. And paleo....that's really tough for me because ideally I like being vegan, but have switched to ovo-lacto-veg a few years ago, which is the most I want to consume animal-wise. I don't think I can ever become a meat eater.

On 3/4/2021 at 5:56 PM, charks said:

Hi there

I too looked six months pregnant. But within 3 days of giving up gluten I had a flat stomach. It was like a miracle. But I wasn't totally gluten free, I was still eating small amounts of gluten in processed foods and still getting neurological problems.  

Ever since I can remember having a problem with a bloated stomach. I thought I had weak stomach muscles. My mother had the same problem. When I was young I was very vain. When I went clubbing I wouldn't eat all day to make sure I had a flat stomach so I could wear my skimpy clothes. I could never understand why going for a meal was considered romantic. I had to wear an 'eating' dress to hide the bulge - and there was no way I would ever have got undressed in front of of any man I was interested in after eating. My sex life has always been 'hanky panky' first  - then food.   

Anyway I'm getting away from the point. I could look six months pregnant at night but after a night's sleep my stomach would look flat and stay flat until I ate. And now my stomach is flat all the time. Unless I get 'glutened'. But I have also given up sugar. I don't eat cakes and sweets. When you eat sugar you're fueling the bacteria in your gut and they produce gas which leads to bloating.  I don't eat gluten free products because they contain so much sugar. And they also contain masses of fat which can also cause bloating. 

Why not have  24 hour fast to reset your digestive system and then eat plain, home cooked foods for a couple of days, avoiding sugar/fructose. That way you can test out your theory of a fructose absorption issue. 

 

Thanks for your reply Charks, I can relate how you used to feel. I'm considering the 24-hr fast thing, although I dread the blood sugar issues, cravings, and hunger! Especially since I can't sleep hungry! 😨

On 3/5/2021 at 12:31 AM, Scott Adams said:

Healing can take an average of 2 years, but if you are eating out regularly you could be getting gluten contamination, however, it sounds like you're pretty strict. Not everyone recovers from casein intolerance, so that could be another lifelong intolerance that could be causing your boating, but many celiacs do recover from that. Reducing your refined carbohydrates and cutting out sugar can help eliminate possible SIBO as well. You may need to do some more work eliminating foods from your diet for a few weeks, and keeping a food diary when you add them back. Some people have nightshade issues, or issues with chicken eggs, corn, soy, etc.

Thanks for sharing your thoughts, Scott, you're so right about the food diary, I've been postponing this for years, long before celiac...

And since I've been gluten free for so long, there shouldn't be any inflammation anyway, I guess..

Hi Trents, thanks for your take on this.

Interesting thought. You think inflammation caused by longterm gluten consumption decreases so rapidly? And if so, how does this go with the lactose intolerance that I seem to be having? If the villi are still damaged, wouldn't this mean they are also still inflamed?