Related issues

[Jmartes71]

Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "

[Scott Adams]

I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological toll of being told it's "just IBS" or that you need a therapist when you know your body is signaling that something is wrong.

While it's true that a normal tTG test can indicate that celiac disease itself is being managed from a dietary perspective, it is a major oversight for your doctors to ignore your other diagnoses like SIBO, a hernia, and Barrett's esophagus, all of which can contribute significantly to the symptoms you describe. You are absolutely right to be seeking a new Primary Care Physician who will listen to your full history, take your Barrett's diagnosis seriously, and help you coordinate a care plan that looks at the whole picture, because your experience is not just in your head—it's in your entire body, and you deserve a medical team that acknowledges that.

I had hernia surgery (laparoscopic), and it's not a big deal, so hopefully you can have your new doctor give you some guidance on that.

[Mari]

Hi Jmartes,

It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test.

Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact. 

If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes. 

PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.

 

[Jmartes71]

I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up.

GI doctor NOT girl..

[Mari]

jmartes,

Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3. 

About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight. 

 

So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net 

 

[Jmartes71]

 Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard

[Mari]

6 hours ago, Jmartes71 said:

 Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard

Hi jmartes,

I brought up doTerra's website and see that they do have many supplements, offer  support and help. And using their organic products has been helpful. and yet you are not able to work enough to support yourself when, if you were healtht, you could work for another 20 years. It does not seem that they offer a program to follow and instead are offering supplements for your symptoms. This has helped you but you are not able to work very much.  The Programs I have seen  online usually have 3 parts. The first is a Parasite cleanse. The 2nd is the Kidney cleanse and the  3rd is a Liver cleanse and gallbladder cleanse. You need to doall these cleanses to have your whole body functioning well. I can only reccommend the program I gave you because that is the one I used and still do. (drclark.net) 

When I see a newprovider and tell I have Celiacs and they look skeptical I tell them that when I am gluttoned the reaction happens 8 or more hours later with intestinal painful cramping followed by diarrhea. Providers are willing to accept tha I probably have Celiacs and are more likely order tests such as vitamin levels. Is this what happens if you eat only a small amount of Gluten?

You mentioned going to Mayors. 20 years ago many Dr.s wanted to include a celiac screening as a standard test so that more people eould diagnosed and not become disabled. It did not happen but the Federal levgislature did pass a law so that Celiacs could claim deductions for the gluten free food they bought. What were you going to ask the Mayors to do?

[Scott Adams]

I have to express some significant skepticism about the drclark cleansing programs you've mentioned. The claim that a specific, three-part parasite and organ cleanse is a universal solution for chronic health issues is a major red flag, as it oversimplifies the immense complexity of the human body and conditions like Celiac disease, which is an autoimmune disorder, not a parasite infection.

Regarding your Celiac disease, the reaction you describe, while real to you, does not necessarily confirm a diagnosis; a delayed reaction is common with various digestive issues, and a definitive diagnosis typically requires specific blood tests and an intestinal biopsy, not just a provider's acceptance of symptoms. Furthermore, your mention of approaching mayors seems to misunderstand the role of local government versus federal policy; the deduction for gluten-free food is a federal tax law, and a mayor has no jurisdiction to implement widespread Celiac screening, which is a medical and public health decision far beyond a municipal leader's purview. It sounds like you are navigating a difficult health journey, but I would strongly advise consulting with qualified medical specialists and registered dietitians over relying on unverified online cleansing programs.

[Wheatwacked]

On 11/19/2025 at 5:08 PM, Jmartes71 said:

I had to stop all my nateral supplements to be a good puppet for medical

Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be.

There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition.

Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days.

On 11/19/2025 at 5:08 PM, Jmartes71 said:

because I was told I wasn't celiac though I am gluten-free since 1994! I

Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy.

At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol.

Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12.

Here is what I take daily. 

• 10,000 IU vitamin D3
• 750 mg g a b a
• [   ] 200 mg CoQ10
• [   ] 100 mg DHEA
• [   ] 250 mg thiamine B1
• [   ] 100 mg of B2
• [   ] 500 mg B5 pantothenic acid
• [   ] 100 mg B6
• [   ] 1000 micrograms B12 n
• [   ] 500 mg vitamin c
• [   ] 500 mg taurine
• [   ] 200 mg selenium 
•  

Edited November 21, 2025 by Wheatwacked
typo

[Jmartes71]

Thankyou.

[Wheatwacked]

I've added NAC, N-Acetyl Cysteine; "crucial for replenishing glutathione—the body's master antioxidant."

I used Clear Eyes 1% NAC lubricating eye drops for several years until the FDA forced them off the market.  In 2015 I had cataracts in bofh eyes.  In 2019 my left eye was clear, right eye was improved.  They are back now.  I discovered new companies with the drops at higher NAC but went with 500 mg NAC capsules.  Spread the cheer 🤓.

My impression so far is the NAC is doing good.  Best with meal.

[Jmartes71]

Thankyou. I have cyclosporine 0.05% OP single use drops and Erythromycin ophth ointment 3.5 Gmail for eyes. Dermatologist gave Pimecrolimus cream 1% and Clobetasol Propoonate USP 0.05% it doesn't help at all.i do see a difference taking Yarrow Pom but its too expensive!

[knitty kitty]

I take Niacin, bilberry, Omega threes, zinc, selenium, and Vitamins C and A for eye health, skin health and digestive tract health. 

The skin, digestive system and eyes are all derived from basically the same sort of cells.  Niacin is extremely important to keeping these tissues healthy.   

Niacin has be shown to prevent cataracts and improve eye health. 

Niacin is turned into tryptophan which is necessary to heal the digestive tract.  Tryptophan is used to make Serotonin, a very important neurotransmitter in mood regulation.  Those with Niacin insufficiency become irritable and easily upset, angry, even.

Niacin improves skin health.  The flushing of Niacin opens the smallest blood vessels in the skin so that waste products can more easily be removed.  I have Dermatitis Herpetiformis.  Niacin helps drain away those built up antibodies in the blisters and improve skin health.  

Bilberry contains lutein and zeaxanthin and other anthocyanins,  potent antioxidants that help protect the eyes from macular degeneration and cataracts.  Bilberry has sGLT1 and GLUT2 which help to lower glucose levels by removing excess glucose from the bloodstream.  High blood glucose levels are bad for eye health.  

Omega Threes are important to provide relief in dry eyes.  You are familiar with how oil floats on water.  Same thing happens with eyes.  Omega threes provide the oily layer that protects water from evaporating from the eyes causing dry eyes.  Omega threes in olive oil, sunflower seed oil,  and flaxseed oils will help improve dry eyes. Vitamin A and Riboflavin B2 are important in this function as well.   None of the medications I was given improved my dry eyes.  I increased my Omega threes and Vitamin A, and had improvement very quickly.

Selenium and zinc are important in skin and eye barrier functions, too, and are important to preventing infections.

When I take 100 mg of Niacin every three hours (but not more than 500 mg/day), my skin and eye health improves.  If one is deficient in Niacin, the flushing effects may be uncomfortable, but ride it out, continue taking Niacin and the flushing goes away as niacin stores inside cells are repleted.  When flushing, don't scratch!  Use pressure applied over a bigger area above the itch.  I wrap up in a towel or blanket to create the counter pressure.  The flushing goes away the longer one takes Niacin.  Don't use Niacinamide (the non flushing form of Niacin).  

Other vitamins that improve eye health are Vitamin E and Pyridoxine B6 and Thiamine B1.  Most Vitamin E sold is derived from wheat germ, so find another source of Vitamin E.  I used Evening Primrose oil, also a source of healthy Omega threes and helps with female problems like perimenopause  and menopause symptoms.

Do be aware that antifungals and antibiotics (as are frequently prescribed) destroy Thiamine.  Immunosuppressive drugs can suppress production of tTg antibodies.  Supplementing with thiamine above the RDA is safe and nontoxic.  RDA were set as the lowest amount to prevent illness.  Optimal health is seen in higher amounts.  

Do talk to your doctor and dietician about supplementing essential nutrients.  

References:

https://pubmed.ncbi.nlm.nih.gov/39183990/

https://pubmed.ncbi.nlm.nih.gov/41156490/

https://pmc.ncbi.nlm.nih.gov/articles/PMC7602486/

Edited February 15 by knitty kitty
Typo correction

[Jmartes71]

Currently having to stop because of mri imaging and past medical stuff that was told to stop with vitamins that would interfere. I keep asking if im diabetic because of the Ketones and when I looked up it mirrors my issues but im negative supposedly. Its all because Im not eating gluten because formerly diagnosed celiac back then just food consumption. Issues is in Cali they aren't addressing the autoimmune part which im currently battling as " just the flu they call it" not its my controlled by mouth celiac but not controlled autoimmune part which last employment damn near killed me as a bus driver and thats the celiac malpractice issue. No care of the patient, as im in this situation. Celiac should follow FOREVER in medical records no matter marriage change name, insurance change, change of anything.It is a battle that is not fair to the patients at all.

[Wheatwacked]

7 hours ago, Jmartes71 said:

stop with vitamins that would interfere.

Did they ever tell you specifically which vitamins would interfere with which tests?

Fermented pickles source of thiamine  and other B-vitamins, The fermentation process with lactic acid bacteria increases the nutrient value.   Colonies of beneficial bacteria can help crowd out the the bad SIBO.

Have you had the rash biopsied for Dermatitus Herpetiformus?  Atopic Dermatitis and dermatitis herpetiformis share symtoms and atopic dermatitis patients have higher risk of dermatitis herpetiformis.  dermatitis herpetiformis is a symptom of Celiac diagnosis.

When I had the carotid artery stent, the hospital put down "wheat allergy" for the food service.  I guess allergy puts the fear of god in them more than the misunderstood Celiac Disease.  Whatever keeps me alive in this world. 

 

[Jmartes71]

No they just said stop all supplements two weeks before.Its so frustrating im not at all happy with my "care team",because im not being seen for my sibo infact my appointment was dropped, I even asked about it and they said Dr prescribed you meds and I stated yes but I again had a reaction.I feel bothersome. I need to find another gi but its useless because its going to be same thing around here.i just feel lost and in tbe medical file they are writing what ever and its really not ok. In fact i dont want to go unless they record the conversation. Yes its that bad.im only having  care and concern for my ms whose Not part of the same health association that pcp and gi are with.I will have to look into changing to another. Mayo clinic is great but its the celiac, sibo, ect and all related issues that need addressed but current " careteam says call when needed. No plans of scheduled dates