Desperately need help - symptoms baffling everybody

[mikehall117]

I am new here and looking for help and answers. Thanks in advance for any help you can give. Despite frequent testing I've not been diagnosed with celiac yet but I do wonder if it's the cause of all my issues. I have myriad life altering symptoms and I'm desperately trying to get to my root cause. I’ve been really quite sick since I was a child, when I had extensive gastric issues, followed by chronic fatigue , a rash and depression as a teenager. I am 41 now and have a number of illnesses, most of them autoimmune:

• Hashimoto's hypothyroidism
• Psoriasis
• Likely autoimmune atrophic gastritis (under investigation)
• Pernicious anaemia (low B12)
• Rapid cycling type 1 bipolar disorder with psychosis that hasn't responded to treatment with over 20 different psychiatric drugs
• Migraine (three a week) 
• Chronic fatigue syndrome
• Hypertension
• Fatty liver
• Metabolic syndrome
• Familial hypercholesterolemia
• Obesity
• Investigated for celiac 3 times but not detected however my gastro did observe that my gut was hugely distended and that my stomach sat forward.

I have many other symptoms as yet unattributed:

• Rash on eyebrows and cheeks, although it is mostly down the sides of my nose and not under my eyes
• Circular rash on chest
• Flaky rash on scalp
• Poor balance
• Poor positional awareness
• Clumsiness
• Weakness and muscle loss
• Foggy thinking
• Very poor memory
• Confusion (sometimes debilitating)
• Occasional panting / shortness of breath
• Anxiety and paranoia
• Persecution complex
• Restless legs
• Tachycardia and palpitations
• Sleep disturbances
• Debilitating intermittent ankle pain
• Aches in every joint and muscle
• Muscle stiffness
• Mouth ulcers
• Dry eyes
• Cold extremities
• Poor circulation
• Pins and needles
• Pain in calf muscles when walking more than 200 yards
• Total hair loss on lower legs
• Constipation / diarrhoea
• Blood in stools
• Pale complexion
• Moon face

While there are a lot of conditions and symptoms it's the neuropsychiatric issues that have become completely debilitating, to the extent that I've been admitted to a psychiatric hospital 5 times and have not responded to any of the 20 different psychiatric drugs that I've been prescribed. I had to work part time for 4 years until a year ago when I was forced to stop work entirely. I've always been sick since childhood but in the last 5 years it has become unbearable and has cost me everything.

The strange thing is there were periods when every symptom has gone into complete remission simultaneously. Looking back this coincides completely with when I go on a low carb diet to lose weight, which I've done five times (the first for weight loss the next 4 to feel well). The same happened again when I went on FODMAP diagnostic diet to try and work out what was causing my gut issues after being told I didn't have coeliac following a negative gut biopsy.

In January I started the Autoimmune Protocol diet to try and control the antibodies that had caused Hashimoto's and yet again every symptom disappeared within ten days! I'm currently in complete remission and feeling better than I have in 10 years - I've even gone back to work and my psychiatrist has said she will soon reverse my bipolar diagnosis. The only genuine commonality between the periods on a weight loss diet, FODMAP and the Autoimmune Protocol diet is that all of them are 100% gluten free.

I am well enough to actually start researching what's wrong with me (when sick I can't read) and I am trying to establish if the above symptoms could be attributable to coeliac disease. I've read through a number of medical research papers that show that there is a link but these are rare so I would welcome some insight if anyone has experienced similar.

I'd love to hear from you. Are there any tests I can ask for (DNA profiling for example)? I had a positive ANA screen (speckled pattern) but this tested negative a week ago since starting the diet and the FODMAP diet result indicated 'wheat sensitivity' diagnosis but nothing more. Due to the severity of my symptoms I will never again eat gluten so any blood test or biopsy will be negative. My doctors are sadly quite clueless.

[ch88]

Gluten can cause the mental symptoms.  There is a strong link or cross reaction between gluten/the brain, dairy/the brain, and dairy/gluten. 

Open Original Shared Link

Some other foods like oats, corn and soy may also be cross-reactive with celiac disease.  

[ravenwoodglass]

You are correct that if you don't go back on gluten you can't be tested for celiac and the gene tests are not diagnostic. Those can only tell you if you have one of the two most common celiac genes. You do seem to have found the answer to your issues though.  With the seriousness of your problems I don't think I would be willing to do a lengthy challenge either. You may have to just be happy being gluten free and healing. Perhaps you might want to talk to your doctors and see if they will make the diagnosis based on your resolution of symptoms.

Welcome to the board and do read the Newbie 101 thread at the top of the Coping section it has a lot of good information. I hope you continue to feel better and better.

[Washingtonmama]

It sounds like you were beyond miserable. But you found the solution! or whatever reason wheat just throws your body for a loop, so avoiding it like the plague seems to be working. I know you might need for a doctor to positively diagnose you with Celiac, but maybe it just doesnt fit into a neat little box to be considered Celiac. It sounds like something 100 times worse, and maybe you will never really know exactly what it is. But you have found the solution, and Im so glad you are feeling better! Ive also heard of Lyme disease causing some of the same issues you had. Also, Ive researched the GAPS diet and know several people it has helped. Its a diet that heals leaky gut. Maybe look it up if you want. 

[GFinDC]

B-12 is one of the vitamins that celiacs often have deficiencies in.  Many symptoms can be caused by vitamin and mineral deficiencies.  I was vitamin D deficient for years.  You can get / eat mackeral, sardines, salmon and tuna for vitamin D.

I suggest getting tested for all the nutrient deficiencies listed below.

Open Original Shared Link

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

[Posterboy]

mikehall117,

GFinDC has given you good advice celiac's get low in a lot of nutrients.

People who have low gastric function/stomach acid also have many of the same symptom's (and nutrient deficiencies)

see this link by dr. myatt that shows the associated diseases that occurs when some one is low in stomach acid for years and years at a time.

Open Original Shared Link

quoting some associated conditions people can develop with low stomach acid.

"Diseases Associated with Low Gastric Function

Low stomach acid is associated with the following conditions:

• Acne rosacea
• Addison’s disease
• Allergic reactions
• Candidiasis (chronic)
• Cardiac arrhythmias
• Celiac disease
• Childhood asthma
• Chronic autoimmune hepatitis
• Chronic cough
• Dermatitis herpeteformis
• Diabetes (type I)
• Eczema
• Gallbladder disease
• GERD
• Graves disease (hyperthyroid)
• Iron deficiency anemia
• Laryngitis (chronic)
• Lupus erythromatosis
• Macular degeneration
• Multiple sclerosis
• Muscle Cramps
• Myasthenia gravis
• Mycobacterium avium complex (MAC)
• Osteoporosis
• Pernicious anemia
• Polymyalgia rheumatica
• Reynaud’s syndrome
• Rheumatoid arthritis
• Scleroderma
• Sjogren’s syndrome
• Stomach cancer
• Ulcerative colitis
• Vitiligo

It also appears that many cases of depression, which appear related to too little neurotransmitters (which in turn are made from amino acids) may in fact be inability to absorb the necessary precursors due to – you guessed it – low stomach acid. I suspect there are a large number of other diseases that begin with a failing digestive system and that have not yet been recognized as such."

Many of your symptom's seem if not exactly alike - similar enough that you might want to research it more.

People who have celiac disease often can be comorbid with Pellagra and the doctor's don't recognize it today.

Here is an article on celiac.com that discusses why this might be so....

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

I know taking Niacinamide helped my digestive problems . . . may be they will help you too!

I wrote a blog post on celiac.com about my experience maybe it will help you to read it.

good luck on your continued journey.  I felt like you 15+ years ago so there is hope people do get better but it is a slog sometimes.

But I highly recommend Magnesium as Magnesium Citrate or Magnesium Glycinate for fatigue, cramps, and energy and Niacinamide for anybody with undiagnosed  GI problems especially if you are not already taken a PPI or else the Niacin contradicts the acid reducer.  but if you are taking PPIs now they are notoriously hard to get off of  and most people fail the first time they try to stop them cold turkey.

Going low carb not just gluten free can help. Think the ketogenic diet that is becoming more popular these days for good reason because many people's heartburn gets better when they cut out carbs.

I hope this is helpful.

***** this is not medical advice

posterboy by the grace of God,

 

[Jmg]

Hi Mike and welcome

As you no doubt know, the only available tests require you to be eating gluten. Given your entirely understandable decision:

3 hours ago, mikehall117 said:

Due to the severity of my symptoms I will never again eat gluten so any blood test or biopsy will be negative. My doctors are sadly quite clueless.

You just have to focus on getting well. In any case I agree with Ravenwoodglass above, I think you've found the answer already and given there's no treatment other than the diet there's not that much to be gained by putting yourself through the diagnostic process just to either get a coeliac or Open Original Shared Linklabel.  Incidentally the latter appears to manifest more often via neuro symptoms so may be a better fit for your experience in any case. 

3 hours ago, mikehall117 said:

I am well enough to actually start researching what's wrong with me (when sick I can't read) and I am trying to establish if the above symptoms could be attributable to coeliac disease.

As Celiac affects the immune system it can present in a lot of different ways or even none, here's a short summary:  Open Original Shared Link a depiction of the systems affected: Open Original Shared Link and here's a much longer list of possible associated conditions:  Open Original Shared Link  in the latter I think you'll find the majority of your own symptoms have at least at some point been linked to gluten. 

Best of luck!

[JaneTX2]

An emerging medical concept in the past 10 years is Mast Cell Activation Syndrome.  Mast cells are part of the immune system and react to Ig antibodies, and new mast cell research may start to tie together all the wide ranging symptoms that seem to resolve when on a gluten free diet.