Seen at Cleveland Clinic - Still having Symptoms

[Walter123]

Hello; many have answered my questions since diagnosed with Celiac, things were ok for a bit, my original complaint prior to knowing I had celiac was to my PCP due to dry mouth and scalloped tongue.  Several months into what "I think" is a Gluten Free Diet; I still experience the dry mouth and now itchy dry skin, especially a dry scalp.

With so many things going on, Celiac, Hashimoto's Hypothyroid, I decided to head to the Cleveland Clinic to see Endocrine. They reviewed my current home town treatment for the thyroid and said they are doing the right thing and my levels are almost where they should be; they emphasized that because my levels were not way off; they contributed any current symptoms to Celiac. 

I spoke of my displeasure with my Gastro Docs at home, as they basically tested, said I had Celiac and then advised "stay away from Gluten", that is the last I heard from them.

Cleveland encouraged me to schedule with their Gastro department and to see a MD specifically focused on Celiac.  They advised I needed to be checked thoroughly for proper nourishment to see how the disease has affected my nutrient absorption; they felt any symptoms I am experiencing now could be related to the lack of many things. I am scheduled with them for August and in the meantime have increased Vitamin D intake; also watching in more detail any possible ways Gluten may be getting in my system; all but totally avoided eating out. 

Anyone have similar experiences; thoughts if I am on the right path?

 

Thanks!

[GodsGal]

19 hours ago, Walter123 said:

Hello; many have answered my questions since diagnosed with Celiac, things were ok for a bit, my original complaint prior to knowing I had celiac was to my PCP due to dry mouth and scalloped tongue.  Several months into what "I think" is a Gluten Free Diet; I still experience the dry mouth and now itchy dry skin, especially a dry scalp.

With so many things going on, Celiac, Hashimoto's Hypothyroid, I decided to head to the Cleveland Clinic to see Endocrine. They reviewed my current home town treatment for the thyroid and said they are doing the right thing and my levels are almost where they should be; they emphasized that because my levels were not way off; they contributed any current symptoms to Celiac. 

I spoke of my displeasure with my Gastro Docs at home, as they basically tested, said I had Celiac and then advised "stay away from Gluten", that is the last I heard from them.

Cleveland encouraged me to schedule with their Gastro department and to see a MD specifically focused on Celiac.  They advised I needed to be checked thoroughly for proper nourishment to see how the disease has affected my nutrient absorption; they felt any symptoms I am experiencing now could be related to the lack of many things. I am scheduled with them for August and in the meantime have increased Vitamin D intake; also watching in more detail any possible ways Gluten may be getting in my system; all but totally avoided eating out. 

Anyone have similar experiences; thoughts if I am on the right path?

 

Thanks!

Hi! I think that you are on the right path. Have you checked for any less obvious sources of gluten? It can be found in toothpaste, soaps, shampoos, lotions, etc. I know that my skin feels much better if I use gluten free products.

Are you eating oats and dairy? If so, they may be contributing to your pain.

I hope this helps!

 

[Walter123]

14 minutes ago, GodsGal said:

Hi! I think that you are on the right path. Have you checked for any less obvious sources of gluten? It can be found in toothpaste, soaps, shampoos, lotions, etc. I know that my skin feels much better if I use gluten free products.

Are you eating oats and dairy? If so, they may be contributing to your pain.

I hope this helps!

 

I do eat oats in some gluten-free granola bars and cereal; my dairy is mainly cheese and eggs; I use Soy Milk; I did get some gluten-free body wash/ Shampoo, but was sometimes using head and shoulders to help with the dry scalp.

I think I was under the impression that I wasn’t that “sensitive” to Gluten because before my diagnosis I was asymptomatic; the MD at Cleveland Clinic said “you definitely have celiac, you tested positive for All the markers where sometimes people come back with one.

[GodsGal]

I know that it is hard, but I would definitely stop eating oats and dairy products. Many of us can't eat them, especially while our guts are still healing. 

Celiac wasn't on my radar either. But, once I went gluten free, I began to realize just how many symptoms I did have that I thought were normal. 

I really like Vanicream skin care products and conditioner. I am currently making my own shampoo using equal parts coconut milk and castile soap. After washing my hair, I rinse it with equal parts of water and apple cider vinegar. (Be careful not to get it in your eyes.) Then I apply the conditioner. That has been very helpful for my itchy scalp!

[Walter123]

6 minutes ago, GodsGal said:

I know that it is hard, but I would definitely stop eating oats and dairy products. Many of us can't eat them, especially while our guts are still healing. 

Celiac wasn't on my radar either. But, once I went gluten free, I began to realize just how many symptoms I did have that I thought were normal. 

I really like Vanicream skin care products and conditioner. I am currently making my own shampoo using equal parts coconut milk and castile soap. After washing my hair, I rinse it with equal parts of water and apple cider vinegar. (Be careful not to get it in your eyes.) Then I apply the conditioner. That has been very helpful for my itchy scalp!

Ok; thanks, so no cheese even though indicates gluten-free or Eggs; also,is the itchy scalp a typical symptom.

[GodsGal]

2 minutes ago, Walter123 said:

Ok; thanks, so no cheese even though indicates gluten-free or Eggs; also,is the itchy scalp a typical symptom.

I'm not a medical professional. Just a friend with celiac. So, I can only speak from my personal experience and from what I have read. I have not had any problems with eggs. The problem that many of us have with milk is an intolerance. Sometimes it is with the milk protein (casein), and sometimes it is related to the sugar (lactose). I actually discovered my milk intolerance before I was diagnosed with celiac disease.

As I understand it, it is pretty common for those of us with celiac to develop intolerances to other foods as well because of our leaky guts. Sometimes these intolerances improve after our GI systems have had a chance to heal. But that is not always the case.

I think that itchy skin in general is pretty common. It can show up in many ways such as dermatitis herpetiformis, contact dermatitis, dry skin, dandruff, psoriasis, etc. Mine is more like contact dermatitis and dandruff, and is definitely triggered by gluten and oats.

I saw a youtube video on celiac that was put out by Mayo clinic. If you are seeing them, then you are in good hands.

[Walter123]

18 minutes ago, GodsGal said:

I'm not a medical professional. Just a friend with celiac. So, I can only speak from my personal experience and from what I have read. I have not had any problems with eggs. The problem that many of us have with milk is an intolerance. Sometimes it is with the milk protein (casein), and sometimes it is related to the sugar (lactose). I actually discovered my milk intolerance before I was diagnosed with celiac disease.

As I understand it, it is pretty common for those of us with celiac to develop intolerances to other foods as well because of our leaky guts. Sometimes these intolerances improve after our GI systems have had a chance to heal. But that is not always the case.

I think that itchy skin in general is pretty common. It can show up in many ways such as dermatitis herpetiformis, contact dermatitis, dry skin, dandruff, psoriasis, etc. Mine is more like contact dermatitis and dandruff, and is definitely triggered by gluten and oats.

I saw a youtube video on celiac that was put out by Mayo clinic. If you are seeing them, then you are in good hands.

Thanks for the info; O have watched Dr. Gundry about leaky gut and would like to dial in more on how to repair this; I know uncontrolled stress has been a big part of my life for the past few years; hopefully getting this all under control will eventually do the trick.  Thanks 

[GF-Cate]

Hi Walter,

It can be really tough to eliminate all sources of gluten, but in order to stop the autoimmune attack on your body, which can cause all sorts of lingering symptoms and complications  (in addition to triggering other autoimmune diseases) it is really necessary and it sounds like you are working really hard to do that. 

Personally for any packaged/processed foods I had to switch to only certified gluten free products. Things labeled "gluten free" weren't cutting it for me and were still causing reactions/symptoms. I did have to eliminate dairy as others mentioned for over a year as my gut was still healing, but I was able to add it back.

It's taken me 3+ years to correct nutritional deficiencies (and still working on a couple), so hopefully the consult you have will help you with figuring that out. Since you're not being seen until August, may be worth it to add other supplements. There are many posts on this forum with great info on what may be lacking. Be sure to pause supplements before blood labs for nutrient levels & thyroid (biotin is the issue for thyroid labs) as you will not get accurate results otherwise.

There is a great (free) podcast series called Gluten Free RN with Nadine Grezskowiak. She is fantastic and the podcast is full of very helpful information - I think I may have read about her here. I also had a consultation with her, which was pricey but worth it for me. She answered all sorts of questions and helped me closely examine my food/diet and other products for any sources of "tricky gluten". Tricky/sneaky gluten sources can include things like: prescription and non prescription medications & vitamins (several thyroid meds have gluten - you can switch to Tirosint for gluten-free thyroid med);  lipbalm/chapstick; dog/cat/fish/other pet food (not that you're consuming it of course, but the residue you get on your hands when your feeding them, or from them licking you after they eat, etc.); kissing your partner after they've consumed gluten; gums & mints...the list goes on.

These are a couple of links with additional things to look out for:

https://health.clevelandclinic.org/spot-secret-sources-gluten-infographic/

https://www.phoenixhelix.com/2017/10/21/15-hidden-sources-of-gluten/

Episode 46 of Gluten Free RN podcast "Where Gluten Hides"

I also have thyroid issues. I have found Izabella Wentz's website "The Thyroid Pharmacist" to be a wealth of information. Much of the information she provides is useful for other autoimmune diseases, including Celiac. 

https://thyroidpharmacist.com/

Also check out her for optimal thyroid lab tests reference ranges (chart is towards bottom of this article) to help interpret your thyroid labs.

https://thyroidpharmacist.com/articles/top-10-thyroid-tests/

As you note, managing stress is crucial for managing autoimmune diseases. Easier said than done.

Hope some of this helps!

[Walter123]

27 minutes ago, GF_Cate said:

Hi Walter,

It can be really tough to eliminate all sources of gluten, but in order to stop the autoimmune attack on your body, which can cause all sorts of lingering symptoms and complications  (in addition to triggering other autoimmune diseases) it is really necessary and it sounds like you are working really hard to do that. 

Personally for any packaged/processed foods I had to switch to only certified gluten free products. Things labeled "gluten free" weren't cutting it for me and were still causing reactions/symptoms. I did have to eliminate dairy as others mentioned for over a year as my gut was still healing, but I was able to add it back.

It's taken me 3+ years to correct nutritional deficiencies (and still working on a couple), so hopefully the consult you have will help you with figuring that out. Since you're not being seen until August, may be worth it to add other supplements. There are many posts on this forum with great info on what may be lacking. Be sure to pause supplements before blood labs for nutrient levels & thyroid (biotin is the issue for thyroid labs) as you will not get accurate results otherwise.

There is a great (free) podcast series called Gluten Free RN with Nadine Grezskowiak. She is fantastic and the podcast is full of very helpful information - I think I may have read about her here. I also had a consultation with her, which was pricey but worth it for me. She answered all sorts of questions and helped me closely examine my food/diet and other products for any sources of "tricky gluten". Tricky/sneaky gluten sources can include things like: prescription and non prescription medications & vitamins (several thyroid meds have gluten - you can switch to Tirosint for gluten-free thyroid med);  lipbalm/chapstick; dog/cat/fish/other pet food (not that you're consuming it of course, but the residue you get on your hands when your feeding them, or from them licking you after they eat, etc.); kissing your partner after they've consumed gluten; gums & mints...the list goes on.

These are a couple of links with additional things to look out for:

https://health.clevelandclinic.org/spot-secret-sources-gluten-infographic/

https://www.phoenixhelix.com/2017/10/21/15-hidden-sources-of-gluten/

Episode 46 of Gluten Free RN podcast "Where Gluten Hides"

I also have thyroid issues. I have found Izabella Wentz's website "The Thyroid Pharmacist" to be a wealth of information. Much of the information she provides is useful for other autoimmune diseases, including Celiac. 

https://thyroidpharmacist.com/

Also check out her for optimal thyroid lab tests reference ranges (chart is towards bottom of this article) to help interpret your thyroid labs.

https://thyroidpharmacist.com/articles/top-10-thyroid-tests/

As you note, managing stress is crucial for managing autoimmune diseases. Easier said than done.

Hope some of this helps!

Thank you for taking the time to pass on all the info; I will surely be re I Ewing the various sites and info you shared; the more I learn the more I can dial in what is goin on; thanks again!

[Wheatwacked]

On 5/21/2021 at 8:49 PM, Walter123 said:

Hashimoto's Hypothyroid...itchy dry skin, especially a dry scalp

I am amazed, in reading through the tests and micronutrient deficiencies related to hypothyroidism that iodine is never even mentioned. Even Dr. Wentz mentions 7 nutrient deficiencies in hypothyroidism, but not iodine. As a nation we are ingesting 50% of the iodine compared to 1970.Cruciferous vegetables interfere with iodine absorption.  They test TSH and T4 and T3 and then prescribe Thyroxine. T4 has 4 iodine atoms per molecule and T3 has 3. Regardless of how much TSH you have, if you are not ingesting enough iodine you cannot make enough T4.  "Seafood, eggs, milk, and milk products are among the best sources of iodine. Vegans, people with certain food allergies or lactose intolerance, and others who consume no or minimal amounts of these foods might not obtain sufficient amounts of iodine"https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/.

Also check how much vitamin A in your food. The supplements have side effects. Consider Cod Liver Oil. Meds, especially blood pressure, can dehydrate you.

[GF-Cate]

On 5/23/2021 at 8:49 PM, Wheatwacked said:

I am amazed, in reading through the tests and micronutrient deficiencies related to hypothyroidism that iodine is never even mentioned. Even Dr. Wentz mentions 7 nutrient deficiencies in hypothyroidism, but not iodine.

She does write about it elsewhere onher website & in her books. It is a topic I am still learning about, but apparently the issue is with Hashimoto's (autoimmune thyroid disease) that supplementing with iodine too early in the healing process - and before other nutritional deficiencies are corrected - can "add fuel to the fire" and cause more harm than good.

https://thyroidpharmacist.com/articles/iodine-hashimotos/

[Wheatwacked]

Dr Wentz states: "Thyroid cells are the only cells in the body which can absorb iodine"   These articles might interest you. These are just excerpts.

"Daily intake of iodine by an individual amounts to 500 micrograms;...Normally about 120 micrograms of iodide are taken up by the thyroid gland for the synthesis of thyroid hormones. While major portion of iodine is concentrated in the thyroid gland, the non hormonal iodine is found in a variety of body tissues including mammary glands, eye, gastric mucosa, cervix and salivary glands (7). With the exception of mammary tissue the function of iodine in these tissues is still not clear " https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063534/

The Wolff-Chaikoff Effect: Crying Wolf?, Abraham, G.E. (optimox.com)"Shortly after the Axis powers capitulated and World War II came to an end, UC-Berkley dropped a bombshell in 1948, which became known as the Wolff-Chaikoff (W-C) effect.1 Where the swords of many nations failed, the pens of two men succeeded. The W-C effect resulted in the removal of iodine from the food supply, and most likely caused a lot of misery and death in the US due to its negative impact on iodine consumption by the population and on the use of inorganic, non-radioactive iodine in medical practice.2-4After centuries of consuming safely large amounts of iodine from seaweed, why would iodine in seaweed suddenly become toxic to mainland Japanese? The data presented in Nishiyama's publication do not justify the alarming implication of the title of that publication. The expression "excessive iodine intake" is taken from Wolff's review.7 More than 50 years after the Wolff-Chaikoff forgery, it is still quoted in iodophobic publications."   https://www.optimox.com/iodine-study-4

 

[ncsc]

Hi,  Check you the Autoimmune paleo protocol diet (AIP).  Sarah Ballantyne's books and website thepaleomom.com, has a wealth of info about this diet.  It is a elimination diet, in which you add in one food from a food group over time.  It has been a game changer for me.  It does take time and cooking/eating at home only.  But, for me, I learned that I have a food sensitivity to nightshades.  There is no test that I am aware of that would confirm this, since it is not an allergy.  After I did the elimination diet and added in foods - one by one over time - I now have a new way of eating and I never felt better.  I have both celiac disease and ulcerative colitis.  I do not eat gluten, soy, corn, nightshades, and most dairy.  For what ever reason, my body likes gluten-free yogurt, but not other dairy products.  I hope this helps.

[Walter123]

Thank you

[Beverage]

Oats can be a real problem. I cannot tolerate the typical gluten free oats, like Bob's Red Mill, perhaps they are under the legal limit but not low enough for Celiac's.   But I can eat "purity protocol" oats.

Here's an article:

https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/

But best is to stop eating oats for a few months and see if that helps, then you can try one of the purity protocol ones.

I get brand gluten-free Harvest off of Amazon.

[Wheatwacked]

I mix 2 packets of Quaker Gluten Free Oats(70g) and  add 7 grams of Bobs Red Mill Flaxseed Meal for the vitamin A. 12 grams of fiber and 520 RAE vitamin A. The theory is that the fiber in oats catures bile, made from cholesterol, to remove it. This causs the liver to use choline to create new bile from cholesterol. In any case my total cholesterol is down 27 mg/dl and triglycerides down 43. Also kidney function improved from stage 2 Chronic Kidney Disease to stage 1.

[Scott Adams]

On 6/2/2021 at 6:05 AM, ncsc said:

Hi,  Check you the Autoimmune paleo protocol diet (AIP).  Sarah Ballantyne's books and website thepaleomom.com, has a wealth of info about this diet.  It is a elimination diet, in which you add in one food from a food group over time.  It has been a game changer for me.  It does take time and cooking/eating at home only.  But, for me, I learned that I have a food sensitivity to nightshades.  There is no test that I am aware of that would confirm this, since it is not an allergy.  After I did the elimination diet and added in foods - one by one over time - I now have a new way of eating and I never felt better.  I have both celiac disease and ulcerative colitis.  I do not eat gluten, soy, corn, nightshades, and most dairy.  For what ever reason, my body likes gluten-free yogurt, but not other dairy products.  I hope this helps.

For those interested, we just did an article on the AIP diet: