Does anyone have any recommendations for Celiac/autoimmune specialists in the UK? I am very unwell, I am a celiac and the gluten-free diet is not helping.

[Marina F]

Hello everyone.

I have celiac disease and despite eating and living gluten free and having a very healthy lifestyle regarding exercise, healthy eating and sleep I am getting Increasingly more unwell. My main symptoms include consistent rashes and discomfort in my private area that stops me being able to sleep, rapid weight gain, brain fog, sudden cellulite, anxiety and depression, painful breasts, chronic fatigue, consistent sore throat and nausea. I’m 23. I have been to and from my GP and walk in centres consistently and even tried to approach a holistic and functional medicine practitioner. I was very excited about the practitioner and she seemed to actually take me seriously but now I’m afraid she is a scam as it SO expensive and she isn’t giving me any solutions after having said I most likely have SIBO, leaky gut, thyroid and adrenal dysfunction, toxicity (or something) impaired liver detoxification, potential parasites and insulin resistance!! And then didn’t tell me what to do! I now feel completely overwhelmed and on the edge of a total mental breakdown as I have been looking for answers and solutions for months and went to my GP for a second opinion and she said that she saw “nothing wrong with my blood tests”!

I am not well, I have had to end a career due to my health this past year, and I need to see a specialist. 
 

Can anyone recommend a Celiac/autoimmune specialist In the UK who is experienced at dealing with more unusual systemic issues? I would REALLY appreciate some advise and I feel that people on here will be most empathetic.

thank you! M

[Scott Adams]

I am sorry to hear that you're having ongoing health issues, even after going gluten-free.

One of our moderators @cristiana is from the UK, and perhaps she may know about a specialist there, but please see this article, as it may be helpful. Do you include oats in your diet? If so, try cutting them out for a few months, as ~9% of celiacs are also intolerant to oat protein, even if those oats are gluten-free. You may also want to try cutting out dairy for the same time period.

 

[knitty kitty]

On 7/18/2022 at 7:00 AM, Marina F said:

Hello everyone.

I have celiac disease and despite eating and living gluten free and having a very healthy lifestyle regarding exercise, healthy eating and sleep I am getting Increasingly more unwell. My main symptoms include consistent rashes and discomfort in my private area that stops me being able to sleep, rapid weight gain, brain fog, sudden cellulite, anxiety and depression, painful breasts, chronic fatigue, consistent sore throat and nausea.  I'm 23. I have been to and from my GP and walk in centres consistently and even tried to approach a holistic and functional medicine practitioner. I was very excited about the practitioner and she seemed to actually take me seriously but now I’m afraid she is a scam as it SO expensive and she isn’t giving me any solutions after having said I most likely have SIBO, leaky gut, thyroid and adrenal dysfunction, toxicity (or something) impaired liver detoxification, potential parasites and insulin resistance!! And then didn’t tell me what to do! I now feel completely overwhelmed and on the edge of a total mental breakdown as I have been looking for answers and solutions for months and went to my GP for a second opinion and she said that she saw “nothing wrong with my blood tests”!

I am not well, I have had to end a career due to my health this past year, and I need to see a specialist. 
 

Can anyone recommend a Celiac/autoimmune specialist In the UK who is experienced at dealing with more unusual systemic issues? I would REALLY appreciate some advise and I feel that people on here will be most empathetic.

thank you! M

Hello, @Marina F,

How are you doing? 

I thought I would let you know that I understand how you feel.  I have had many of the same symptoms.  Doctors were not a great help.  Doctors are trained in universities funded by pharmaceutical companies to prescribe pharmaceuticals.  Not for our benefits but theirs.  Doctors do not recognize deficiencies in vitamins and minerals.  

Celiac Disease causes malabsorption which results in malnutrition, vitamin and mineral deficiencies.  Many of us are ill because we cannot absorb sufficient vitamins and minerals with which our bodies can heal. 

When we switch to a gluten free diet, we cut out a major source of vitamins.  Gluten based grains, wheat, barley and rye, are required by law to be enriched with vitamins and minerals lost in processing.  Processed food manufacturers choose to add the cheapest, synthetic, most shelf stable vitamins in order to reduce their costs and increase profits.  Unfortunately, these vitamins have a long shelf life because they are not very reactive nor bioavailable (our bodies cannot utilize these forms easily).  

Eliminating gluten containing products also eliminates those added vitamins.  Gluten free facsimile foods are not required to be enriched with vitamins and minerals.  The gluten free diet can be low in various vitamins and minerals.  So, it is beneficial to supplement vitamins and minerals while you are healing. 

There are four fat soluble vitamins (Vitamins A, D, E, and K).  There are eight essential B vitamins, and Vitamin C, that are water soluble.  We cannot make these vitamins, so must get them from our diet and supplementation.  

Deficiency in Thiamine Vitamin B1 may show up first because  it cannot be stored for more than three weeks.  Illness, stress, physical activity and hot weather all drain our thiamine.  We can become insufficient in Thiamine in as little as three days.

Early symptoms of Thiamine insufficiency include anxiety and depression, trouble sleeping, rapid weight gain, brain fog, sudden cellulite, chronic fatigue, consistent sore throat and nausea.  

I've experienced all these myself. 

Thiamine is needed to make energy in our mitochondria in every cell we have.  Without sufficient Thiamine, our body becomes easily fatigued and our brains become foggy.  Our brains require as much Thiamine for thinking at a desk job as our muscles require for running a marathon.

I had weight gain because when insufficient in Thiamine, our bodies try to conserve what little thiamine there is by storing carbohydrates as fat instead of burning carbohydrates for energy.  In one study, 76% of patients getting weight loss procedures done are deficient in Thiamine.  Cellulite forms because of insufficient thiamine (and Vitamin C and Niacin B3) needed to form the matrix of our skin.  Given the proper nutrients, this reverses.

Thiamine deficiency can cause nausea and esophageal eosinophilia.  Thiamine is needed to produce digestive juices, insulin, adrenaline, thyroid hormones.  The pancreas requires a great deal of Thiamine to make insulin.  Without sufficient Thiamine, we don't make enough insulin.  It's not insulin resistance, it's thiamine deficiency preventing enough insulin production.  Thiamine deficiency causes the insulin producing cells to die.  Scientific research has found 98% of Diabetics are deficient in Thiamine.  

Adrenal fatigue is thiamine deficiency.  Thyroid problems can be caused by thiamine deficiency.  

The liver uses lots of Thiamine to remove toxins from the body.  Insufficient Thiamine can result in Non-alcoholic fatty liver disease.  Fat is abnormally stored in the liver because of an insufficiency of Thiamine.

Small Intestinal Bacterial Overgrowth can be caused by Thiamine insufficiency.  Thiamine is used to keep "bad" bacteria from creeping into the small intestine.  Without enough Thiamine, the "beneficial" bacteria cannot fight off the SIBO (carbohydrate hungry) bacteria.  Thiamine is needed to fight off parasites, too.  

The World Health Organization says a Thiamine deficiency can be diagnosed by looking for improvement after taking 500 - 1500 mg of Thiamine Hydrochloride several times a day for three days.  The WHO recommends this route because blood tests for thiamine deficiency are not reliable or unavailable due to costs and time delay.  Damage may be irreversible if thiamine deficiency is not corrected quickly.  If improvement is seen, thiamine should be continued for months to years.

Please read this article....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Hiding in Plain Sight: Modern Thiamine Deficiency

And for more of my story read my blog and posts "Thiamine, thiamine, thiamine" where I've stored my research and my story.  

You need to see a Celiac savvy nutritionist.  Take a good B Complex, Vitamin C, magnesium, and Vitamin D and Thiamine as Thiamine Hydrochloride, Benfotiamine and Allithiamine.

Hope this helps!

 

[Maddie6332]

On 7/18/2022 at 8:00 AM, Marina F said:

Hello everyone.

I have celiac disease and despite eating and living gluten free and having a very healthy lifestyle regarding exercise, healthy eating and sleep I am getting Increasingly more unwell. My main symptoms include consistent rashes and discomfort in my private area that stops me being able to sleep, rapid weight gain, brain fog, sudden cellulite, anxiety and depression, painful breasts, chronic fatigue, consistent sore throat and nausea. I’m 23. I have been to and from my GP and walk in centres consistently and even tried to approach a holistic and functional medicine practitioner. I was very excited about the practitioner and she seemed to actually take me seriously but now I’m afraid she is a scam as it SO expensive and she isn’t giving me any solutions after having said I most likely have SIBO, leaky gut, thyroid and adrenal dysfunction, toxicity (or something) impaired liver detoxification, potential parasites and insulin resistance!! And then didn’t tell me what to do! I now feel completely overwhelmed and on the edge of a total mental breakdown as I have been looking for answers and solutions for months and went to my GP for a second opinion and she said that she saw “nothing wrong with my blood tests”!

I am not well, I have had to end a career due to my health this past year, and I need to see a specialist. 
 

Can anyone recommend a Celiac/autoimmune specialist In the UK who is experienced at dealing with more unusual systemic issues? I would REALLY appreciate some advise and I feel that people on here will be most empathetic.

thank you! M

I don't know how to help, and I don't know what to do. But, I really hope your feeling better, and I hope you get well soon!

[jwoolman]

You can have celiac disease and also unrelated food allergies or sensitivities to things in your environment )pollen, mold, dust mites, cleaning chemicals, etc.). If like most people you do not have any life-threatening reactions to anything, you can safely do home testing.
 

Or get lab tests to use as a starting point. As a chemist myself, I feel obliged to tell you that such tests can have false positives and false negatives for various reasons and also may simply not test foods you might eat regularly, so you do need to try the old-fashioned elimination method for testing various forms of foods (raw vs cooked are different, organically grown vs pesticide-grown and meat from animals given antibiotics to enhance growth can make a difference if you are sensitive to specific pesticides or antibiotics). Skin prick tests are especially unreliable. But such tests can still give you some guidance about possible suspects, and are especially useful when dealing with infants or small children. 
 

If you suspect foods, in addition to a gluten-free diet you might try elimination-reintroduction of suspected foods. You can try eliminating small groups of foods to see if it makes a difference, if yes than start reintroducing one at a time to figure out the culprit or culprits. Or eat foods that you are sure are safe for a week or so and then if you feel better, add other foods back in one at a time.

Be aware that what you eat at the same time can change results because absorption times change. This is why one-food meals can be especially helpful.

Also many people have thresholds for reactions. So smaller amounts of the food may cause no trouble but once you get bigger amounts - you start reacting. Stress is additive, so you might have a problem during pollen season or under other stress but no problem in winter or when you are relaxed.

If you can fast, you could try fasting for a day or two as well before testing. Up to five days has been recommended but I only lasted for two days... . Still worked fine. I think even a 24 hour fast would be helpful if possible. That can clear stuff from your system and make reactions more obvious when you try foods one at a time.

Just do what works for you. The key thing is to put on your detective hat and play Sherlock Holmes. Even just keeping a food/symptom diary for a while with no other approach may help you track down your culprits.
 

Be aware that you can have just about any type of symptom from foods. A friend had some kind of cardiac anomaly while running and his doctors could not find anything wrong. He did medical stress tests more than once. I suggested just keeping a food/symptom diary and he quickly realized eggs were the culprit for him. So he just had to stop eating eggs to finally solve the baffling problem.  

Reactions can occur within 10-15 minutes, an hour, several hours, or even the next day so that can it make it tricky to figure out what foods are bothering you. One-food or two-food meals can help the detective work - eat all you want, just keep eating sessions a few hours apart. Free food trackers for your phone or computer make it a lot easier to figure things out than in ancient times when I did it!

My major allergens were easy to spot, I got very familiar symptoms quickly and it explained a lot about problems I had been having under specific circumstances when I ate those foods more often.

Look up rotation diet for food allergies for info and ideas. I just made sure I had some of each of my "basic food groups" each day and checked for macros, and ate several meals a day including one or two foods for a while. While testing and recovering, I would rotate which foods in food families I would eat each day and decided on a two-day interval between them. For example, apples one day and pears two days later, with stone fruit or grapes on the day in between. Or rice on one day, millet the next, wild rice on the third day.

Many people have some foods they need to just stay away from but many others that bother them only if they eat them too frequently. So your diet will not necessarily be very restricted forever. Also just knowing what certain foods do to you make it easier to plan when you eat them - I am stricter under deadline or other stress.
 

You will get a feeling for what intervals you need.  Some need shorter intervals and others need longer intervals. I don't need much of an interval, but I do better not eating the same thing every day. So I still try to vary fruit, veg, nuts, seeds, grains, legumes (my basic food groups - I'm vegetarian but allergic to egg and dairy). A lot of foods don't matter too much for me, so I hang looser on those, but others do need to be occasional treats (like tomatoes....).