Self diagnosed and preparing for a real diagnosis. How to find the right doctor?

[pipercub]

Hi all, I am a 48 year old female who saw a naturopath at 40 because I felt I was aging every day (not in a vain way, but I just felt like everything was breaking down including my brain, skin, hair, energy, etc).  My regular doctor said "You are a working mom.  You are getting older.  Of course you are going to be tired and of course you are aging." I was exhausted, lost much of my hair, could not THINK, bloated and gassy all the time, etc.  Then I saw a naturopath. He diagnosed me with malabsorption, put me on a course of 5 IVs to get nutrients back into me, loaded me up with an overwhelming vitamin protocol, and told me I needed to adhere to a gluten-free diet "non-negotiable." It completely stressed me out as I tried to navigate the gluten-free life and pay for and managed all the vitamins and supplements throughout each day.  Over the last 8 years I have learned to be what I call 99% gluten-free because as hard as I try I'm sure I'm getting some gluten poisoning at restaurants and through random food items that were "processed in a facility that also processes wheat."  I have had a life of IBS, bloating after eating (always thought that was normal), can't THINK, terrible memory, thyroid problems, infertility, extremely low iron, mysteriously low blood platelets, discovered dairy was the culpit of my severe eczema (now cured), etc.

I want a definitive answer on whether or not I have celiac.  For me, I view gluten as something that will perhaps kill me slowly. . . it damages my intestines and then I stop absorbing nutrients which over time leads to all sorts of problems. But it's hard to be 100% perfect gluten-free when no one has tested me, warned me, monitored me. . . Yes, I get bloated and have constipation if I eat a lot of gluten, but I never do that. What does happen in my life is, for example, I go to a dinner party and the host is excited to tell me that she made everything gluten free so that I could eat it and as she describes it we realize there was a tablespoon of soy sauce in the sea bass marinade.  She feels terrible and I'm left wondering if I should treat it as poison and refuse to eat it or just eat it along with everyone else. And I guess I need to learn a lot more about gluten because I just learned on this forum that rice krispies have malt and malt has gluten?? I did not know.  MY QUESTION: How do I find a doctor who will not only test me, but who understands celiac enough to guide me and follow up with me to help hold me accountable.  100% gluten-free isn't an easy lifestyle. No doctor ever asks me about my diet.  When I mention that I eat gluten-free, the response I get is dismissive, like "hmm. Why are you telling me this" or "sounds like that could be a healthy choice," like I'm just trying to avoid carbs.  Is there a certain type of doctor I should look for?  Should I find a naturopath who is familiar with celiac?  Should I interview my healthcare provider before choosing who should order and interpret my celiac panel?  My OB/GYN ordered a celiac panel for me last week but I'm not doing it because for all I know, I've been successful in avoiding gluten.  Shouldn't I eat gluten for a while before getting tested?  It sounds so counterproductive to purposely eat gluten, so I want to find the right doctor before doing this to my body.  Btw, I live in a rural area but I am a few hours from Seattle.  I mention that in case anyone reading happens to know a celiac expert in Seattle/surrounding area.

[trents]

Welcome to the forum, pipercub!

Unfortunately, you are in the no man's land of wanting to get tested but having already approximated eating gluten free which would likely compromise the testing, even though you are not 100% gluten free. If you really want to go through with the testing you need to have been consuming the amount of gluten equivalent to that contained in two slices of wheat bread daily for 6-8 weeks before the Celiac antibody blood test and at least two weeks before the endoscopy/biopsy.

From your post it is not clear to me if your attempts to eat gluten free has had a positive impact on your symptoms.

The best doctor to consult with about getting a celiac blood antibody panel done is a gastroenterologist. However, you can also purchase a home test kit for about $100 from Imaware: https://www.imaware.health/at-home-blood-test/celiac-disease-screening Everyone who has been a participant in this forum for anytime at all will tell you that the medical community is woefully ignorant about celiac disease but the GI docs seem to be more aware than most as a whole.

It seems to me your biggest challenge to this point is not being able to stick to a true gluten free diet. Several recent studies show that most people who believe themselves to be eating gluten free are really managing only to lower the amount of gluten they take in because of not being careful enough and because of cross contamination or just plain ignorance of where gluten is hidden in eatery food. The studies point out that this is particularly true of those who still dine out. Cutting back on gluten may give some symptomatic relief while not allowing the gut to truly heal. If you are serious about wanting to find healing you need to make a concerted effort to totally eliminate gluten from your diet. When people ask you over for a meal, drill down with them on what exactly has gone into the food. The average person has no idea how gluten is tucked away in the processed food supply. For instance, they make a casserole and used rice noodles instead of wheat noodles. But they used canned soup and almost all canned soups use wheat as a thickener. Or they make an Asian dish with rice but no noodles. But they didn't know that most soy sauces contain wheat. Or, when you go to Olive garden and order a meal with gluten free pasta but the cook boils the gluten free pasta in the same kettle as he just boiled wheat pasta. Or, someone takes you out for an ice cream Sunday and you didn't realize that the hard shell chocolate sauce has wheat starch in it to make it glaze over.

I'm reading between the lines here but it seems to me you need to become better educated about where and how gluten is hidden in the processed food industry so you can be more consistent in avoiding it and so you can help family and friends understand how to avoid exposing you. I would also avoid eating out until you get this sorted out. Or, if you do eat out, order only things that you know will not contain gluten and will not get cross-contaminated in preparation like hard boiled eggs, fresh fruit, baked potatoes and steamed veggies. And somehow, you need to become your own bold advocate when eating out or accepting dinner invitations from family and friends. Develop some stock inquiry lines that allow you to gracefully broach the issue but get others onboard with you. For instance, when ordering food at an eatery, you might say to the waitress, "I have a medical condition that requires me to avoid gluten. Can you help me make some safe choices from the menu?" and "Could you ask the cook to make that omelet in a clean pan, please?" That kind of thing.

 

[Scott Adams]

Welcome to the forum!

I agree with @trents and this article may be helpful for you to navigate the gluten-free diet better:

 However, you may have gluten sensitivity instead of celiac disease, and around ~12% of people have this while only about 1% have celiac disease, and there is currently no diagnostic test for it, although the treatment is exactly the same, a gluten-free diet.

I guess you need to decide if you want to get tested for yourself, or for others like your doctors, friends or family. Depending on how bad your symptoms are when you eat gluten, you may find that they could isolate you more from social gatherings than a gluten-free diet.

[pipercub]

Thank you for the responses!  I'm deciding between a gastroenterologist or a naturopath to do the celiac panel and be my doctor to help hold me accountable to whatever protocol is right for me going forward. Not that I need someone else to hold me accountable, but every once in a while I ask myself "is all this avoidance of gluten really necessary? Hopefully I'll find out that I'm non-celiac gluten sensitive and we'll determine that my sustainable diet of 99% gluten free will suffice!  I just want to know that I'm not slowly ruining my insides.  I can't feel my villi dying so I don't know how bad my intestines are until I start suffering extremely obvious things like my hair thinning. Simply not feeling good isn't obvious enough for me - too many life factors to point a finger at to believe a bad day is the result of gluten.

[Scott Adams]

I hope you find out, and please chime in here and let us know how things turn out.

[Wheatwacked]

On 5/16/2021 at 11:25 PM, pipercub said:

I want a definitive answer on whether or not I have celiac.

As you are already on a gluten free diet the tests will be negative. You might consider DNA testing for genetic markers for celiac. Celiac Disease is a disease of malabsorption. Of the doctors you mentioned the naturopath seems the most knowledgeable and proactive.

Adrenal Insufficiency (not adrenal fatigue which is in the realm of quackery) might be cause of muscular pain and fatigue. I am on a 'pay to play' relationship with prednisone. I take 5-10 mg and feel great, don't and I hurt and get nothing done. Mine is because I've been on it since 2012. Back then it took 30 mg a day to get me out of bed and it was the only thing that worked so I am grateful. After I started Gluten Free it quickly dropped to 10 mg. Regardless of my original needs, at this point it is secondary adrenal fatigue due to taking prednisone. Nice Catch-22.

Among the 10 different vitamins and minerals I take every morning I eat a sheet of sushi nori. A 2.5 mg sheet has 400 mcg, the upper limit is 1100 mcg and the Japanese eat way more. As kids in the 60's, one glass of milk and a sandwich supplied 300 mcg. I had tried an expensive iodine supplement for thyroid support but it just supplemented the manufacturers income. Shortly after starting the nori (2 sheets a day) I noticed improved muscle tone, especially in my chest and shoulders. 

"Urinary iodine measurements from NHANES have been used since 1971 to monitor the iodine status of the U.S. population [31]. Since the inception of the NHANES monitoring program, urinary iodine measurements have shown that the general U.S. population is iodine sufficient. This is despite the fact that 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...Iodine deficiency has multiple adverse effects on growth and development, and is the most common cause of preventable intellectual disability in the world [40]. Iodine deficiency disorders result from inadequate thyroid hormone production secondary to insufficient iodine" https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/.

Potassium:  A year of 5 grams a day finally lowered my blood pressure to normal when medical cause unacceptable side effects. "Assessing potassium status is not routinely done in clinical practice, and it is difficult to do because most potassium in the body is inside cells...Dietary surveys consistently show that people in the United States consume less potassium than recommended, which is why the 2015–2020 Dietary Guidelines for Americans identifies potassium as a “nutrient of public health concern...Groups at Risk of Potassium Inadequacy

Potassium inadequacy can occur with intakes that are below the AI but above the amount required to prevent hypokalemia. The following groups are more likely than others to have poor potassium status.

People with inflammatory bowel diseases
Potassium is secreted within the colon, and this process is normally balanced by absorption [35]. However, in inflammatory bowel disease (including Crohn’s disease and ulcerative colitis), potassium secretion increases, which can lead to poor potassium status. Inflammatory bowel diseases are also characterized by chronic diarrhea, which can further increase potassium excretion" https://ods.od.nih.gov/factsheets/Potassium-HealthProfessional/

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