Struggling with symptoms and need some advice

[will4318]

Hi everyone, 

I went to my GP about six months ago because I was feeling exhausted all the time, I have also had stomach problems for a while so she did coeliac screen (Serum tissue transglutaminase Level and Immunoglobulin A level) which both came back normal however she also found that I have iron deficiency and folate deficiency. She said that the blood test doesn't rule out coeliac but she thinks it would be best to refer me to a chronic fatigue clinic. 

So several months later I have seen the clinic, the confirmed iron and folate deficiency so put me on replacement. They want to see my again in 4 months time and do some more blood tests (not coeliac) 

The problem is that I now feel worse than ever, I'm so tired all the time, I have pins and needles in my legs (gp thinks it might be b12 deficiency but didn't want to test because Im seeing a constant) and I'm still having bad stomach problems (aches, thick stick stools or very watery) 

I don't think that I have any choice than to just wait let the NHS do its thing but I wonder if you think it's worth me trying to go gluten free as a test whislt I'm waiting or if I'm best to keep going as my systems present themselves normally. 

 

Thanks 

 

Will

 

[Ennis-TX]

The old golden standard is a Endoscope with biopsy. I might suggest going to a GI and getting a double scope from both ends and 6 or so biopsies of the small intestine to check for celiac or damage. Checking with both scopes could rule out issues in the large intestines that could also present like a form of colitis.

The pins and needles could be either b-vitamins or magnesium both can cause these issues. Since you bounce between sticky and wet stools I would say try a Magnesium glycinate like Doctors Best powder at night before bed. B-vitamins try something like Liquid Health Energy & Stress, Vitacost should have both. Look up deficiencies in both and see if any bells sound on other symtoms.

Trying the gluten free diet, if gluten is the issue you should do ALL testing first as if not eating gluten daily then the testing can be inconclusive.
After all testing regardless try the diet you could be slightly Gluten sensitive IE.

[cyclinglady]

Hi!  

It is up to you whether or not you want to push for additional celiac disease testing with the NHS.   I am not a doctor, but taking supplements will 8mprove you blood work.  The problem is that if you have celiac disease (or another underlying issue), you will become deficient again once you stop the supplements.  

Keep in mind that you did not receive the entire celiac panel and some 10% of celiacs are seronegative.  

Learn more from this forum member who is a Neonatologist (preemie baby doctor) and also has celiac disease: 

http://www.jessicamaddenmd.com/JESS-Blog/May-2017/The-Alphabet-Soup-of-Celiac-Blood-Testing

[will4318]

Hi both, 

 

Thanks for your replies. I guess I just need to try and wait. 

Just abit frustrating that every doctor I see asks if I have been checked for coeliac disease when I haven't been referred for it. 

 

Will 

 

 

[Chris21]

Hi Will

I'm currently playing the waiting game too. It’s ridiculous because they want to wait and wait for results yet I’m constantly feeling so ill. I understand they’re waiting times etc...but almost feels like I’m having to constantly punish my body whilst I wait.

Really want the blood test results, that would be enough confirmation for me. I know everyone will say wait for endoscopy but when you have to keep waiting and eat what is effectively making you ill it’s not nice.

I'm just frustrated now. I’ve been  unwell for 2 months straight and missed a lot of work

[will4318]

Hi everyone, 

 

Thanks for your replies, it turns out that I'm covered under my wife's works health insurance so my gp has given me a private referal and the insurance company have approved a full coeliac blood panel and a biopsy so fingers crossed I'm going to finally get a resolution. 

Thanks 

 

Will 

 

 

[frieze]

good!

[Maureen Haley]

I have dermatitis herpetiformis and have to be gluten free.  I've been having mild breakouts lately and the only suspect food is candy (milk duds) that has "gluten free" on the box and is listed on every gluten free candy list I've found.  Any ideas about breakouts with foods that are confirmed, in several reputable info places, that could cause a breakout?

[Ennis-TX]

1 hour ago, Maureen Haley said:

I have dermatitis herpetiformis and have to be gluten free.  I've been having mild breakouts lately and the only suspect food is candy (milk duds) that has "gluten free" on the box and is listed on every gluten free candy list I've found.  Any ideas about breakouts with foods that are confirmed, in several reputable info places, that could cause a breakout?

Might start a new thread, explain your diet, in addition to the milk duds. DH if very trick, I myself do not have it, but I have seen many talk about it over the years. A few common things are that DH suffers are much more sensitive to gluten, IE if something test below 20ppm (the limit of testing accurately) it can be gluten free but might have traces enough to trigger a reaction. Iodine in food like nori, seaweed, fish, iodized salt, can amplify reactions in many. Unrelated but Iodine can make allergic reactions worse also.

A few common things that might have missed, for the super sensitive,  touching glutened surfaces (shopping buggy, doors, tables) before eating, poping a mint, or gum (done this at a grocery store) Inhaling gluten flour in the air and having it drain down into your stomach, can also trigger the more sensitive celiacs.

[Posterboy]

9 hours ago, Maureen Haley said:

I have dermatitis herpetiformis and have to be gluten free.  I've been having mild breakouts lately and the only suspect food is candy (milk duds) that has "gluten free" on the box and is listed on every gluten free candy list I've found.  Any ideas about breakouts with foods that are confirmed, in several reputable info places, that could cause a breakout?

Maureen,

Here is some research that might help you.

Some of this old(er) research (forgotten) and some of this is newer research 5 or 6 years old not yet understood.

Soy can cause atopic dermatitis and if it is only mild DH then the atopic dermatitis might being confused as DH instead.

Here is the research on Soy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3726893/

Milk duds according to Fooducate.com has both Milk Fat and Soy Lecithin in them.

According to medium range research 10 or 15 years old about 40 percent of Celiac's also react to dairy/caseins etc. in their diet.

https://www.tandfonline.com/doi/full/10.1080/09540100400003204

And even older (long lost research) established Milk Sensitivity to/as a trigger food in DH.

Here is the abstract entitled "Milk Sensitivity in Dermatitis Herpetiformis"

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2133.1970.tb15755.x

and might explain why even when one is 100% gluten fee DH might still bother them because all the food triggers have not been eliminated in their diet like caseins/milk and/or soy for example.

I  hope this is helpful but it is not medical advice.

2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

 

[Posterboy]

On 10/4/2018 at 7:43 AM, Ennis_TX said:

The pins and needles could be either b-vitamins or magnesium both can cause these issues.

 

On 10/4/2018 at 3:36 AM, will4318 said:

The problem is that I now feel worse than ever, I'm so tired all the time, I have pins and needles in my legs (gp thinks it might be b12 deficiency

Will,

Both your GP and Ennis_TX has given you good advice.

Try B-12 as a sublingual.

Try Magnesium as Ennis_TX suggested and it can help your fatigue not related to an iron deficiency.

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things” this included

Posterboy by the grace of God,

[will4318]

On 10/13/2018 at 1:54 AM, Posterboy said:

 

Will,

Both your GP and Ennis_TX has given you good advice.

Try B-12 as a sublingual.

Try Magnesium as Ennis_TX suggested and it can help your fatigue not related to an iron deficiency

Hi Posterboy, 

Im definitely going to try and find some sublingual b12 as the Dr is pretty sure that's the issue but said they should have tested before putting me on folate replacement. 

Im seeing the consultant on Thursday and hopefully having the biopsy a week on Wednesday so hopefully I will know what's going on soon. 

Because they want to do a biopsy they told me to make sure I have something containing gluten at every meal and since then my stomach pains, bloating and gas have got  worse but at least it's not to far away now I guess.

 

Thanks 

 

Will 

[Maureen Haley]

I have dermatitis herpetiformis and have to be gluten free.  I've been having mild breakouts lately and the only suspect food is candy (milk duds) that has "gluten free" on the box and is listed on every gluten free candy list I've found.  Any ideas about breakouts with foods that are confirmed, in several reputable info places, that could cause a breakout?

Thanks Poster Boy.  I'm checking these other factors out

[Posterboy]

Maureen,

Go back and read the links I posted.

I know most people don't unless they are searching for a particular answer.

I actually come upon this research recently looking for something else.

As far as I can tell it has been completely overlooked (forgotten) with time.

I will post the abstract here for those who won't get to read it and are still looking for answers.

It is quite old but it is good research.  The age of the research don't determine the quality of it.

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2133.1970.tb15755.x

Here is full citation from the abstract.

MILK SENSITIVITY IN DERMATITIS HERPETIFORMIS

O. CH. POCK‐STEEN

A.‐M. NIORDSON

First published: December 1970

https://doi.org/10.1111/j.1365-2133.1970.tb15755.x

Cited by: 16

Abstract

"SUMMARY.– A case of dermatitis herpetiformis elicited by the intake of milk is described. A woman aged 30 had suffered from colic, loose stools and fatigue for 3 years. Investigation revealed a severe atrophy of the intestinal mucosa, increased faecal fat excretion, and impaired xylose absorption. On a glutenfree and almost milk‐free diet the malabsorption improved, but it recurred during a period with increased milk intake; at the same time dermatitis herpetiformis developed. Following renewed milk elimination the dermatitis disappeared. On repeated provocation and elimination of milk the dermatitis herpetiformis reappeared and disappeared. During milk intake the gamma‐G, gamma‐A and gamma‐M‐globulin increased and, when milk was eliminated, they decreased. It is suggested, that in this patient the ingestion of milk provided an antigenic stimulus which was in some way concerned with the development of the skin lesions."

It is me again.

If this old research is true then other (newer) research will usually support this long forgotten research about how milk caseins can also trigger DH or at  least a  antibody response to caseins in the diet.

And there is newer research that confirms this reaction in approx. 40% of Celiac's.

Entitled "IgA anti-gliadin antibody immunoreactivity to food proteins"

https://www.tandfonline.com/doi/full/10.1080/09540100400003204

quoting for reference

"We developed a competitive enzyme-linked immunosorbent assay (cELISA) based on bread wheat flour gliadin as coated antigen and human serum IgA as primary antibody in order to quantify the immunoreactivity of untreated celiac patient IgA antigliadin antibodies (AGAs) to different food proteins.  . . .. but there was considerable immunoreactivity to caseins: 39% to bovine caseins and 65% to goat caseins (base gliadin reactivity: 100%)"

So it seems you might be one of the almost 40% of Celiac with DH who might also be reacting to Casein's in your (Milk) chocolate.

And doctor's today are no longer aware of this old but good research on the topic.

I just found it my self and I do a lot of research.

Try eating low casein dairy (like butter, kefir, or cream) to see if it makes your DH worse then you will know for sure.

If you can eat clarified butter aka Ghee (common in Indian foods) because they have trouble with lactose/casein then it is the casein you are reacting too and you have not associated dairy as one of your triggers for your DH yet?

But the (Milk) chocolate is the most probably trigger in gluten-free labeled foods with Milk/Casein still in them.

I hope this is helpful but this is not medical advice.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

 

[Posterboy]

14 hours ago, will4318 said:

Hi Posterboy, 

Im definitely going to try and find some sublingual b12 as the Dr is pretty sure that's the issue but said they should have tested before putting me on folate replacement. 

Im seeing the consultant on Thursday and hopefully having the biopsy a week on Wednesday so hopefully I will know what's going on soon. 

Because they want to do a biopsy they told me to make sure I have something containing gluten at every meal and since then my stomach pains, bloating and gas have got  worse but at least it's not to far away now I guess.

 

Thanks 

 

Will 

Will,

I say sublingual because this bypasses the stomach entirely.

When you are low in B-12 you are probably low in stomach acid too. . .and it and intrinsic factor (in the stomach) is needed to absorb B-12 and why we commonly become low in it.

Taking sublinguals avoid the IF issue's in the stomach.

Also have them check your Vitamin D levels and your homocystiene levels.

They (Homocysetieine) levels are often elevated when you have folate and B-12 problems.

I think you said your were low in Iron too in another thread.

see this post/thread

https://www.celiac.com/forums/topic/119240-diagnosed-with-ttg-iga-level-of-128-three-days-ago-trying-to-conceive-or-should-i-hold-off/

it explains well why we become low in Iron when our stomach acid get lows.

also see this thread about extreme bloating.

https://www.celiac.com/forums/topic/122303-extreme-bloat-help/

And when you get through with your testing try this home tests to see if your stomach acid is too low to absorb your iron naturally.

https://drjockers.com/5-ways-test-stomach-acid-levels/

strong stomach acid for animals (humans etc.) is like lime on a weedy field.

It makes/lets us extract our nutrients!

They are there in the food we eat . . .we just can't extract them any more.

I must stop for now.

I hope this is helpful but it is not medical advice just some of the things I did that helped me.  this blog post explains it in more detail when you get a chance to read it all and you have asked your doctor's to test you for low  stomach acid going mis/undiagnosed.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

We know this is true or at least plausible IMO opinion because these nutrients get low when we get low in stomach acid!

As always “Consider what I say; and the Lord give thee understanding in all things” 2 Timothy 2:7 this included.

Posterboy by the grace of God,

[cyclinglady]

23 hours ago, Maureen Haley said:

I have dermatitis herpetiformis and have to be gluten free.  I've been having mild breakouts lately and the only suspect food is candy (milk duds) that has "gluten free" on the box and is listed on every gluten free candy list I've found.  Any ideas about breakouts with foods that are confirmed, in several reputable info places, that could cause a breakout?

Thanks Poster Boy.  I'm checking these other factors out

Maureen,

DH is celiac disease.  It manifests on the skin.  The antibodies that cause celiac disease/DH are actually in the skin and can take a very long time to resolve  (on a gluten-free diet).  I do not have DH, but if you read the postings in the DH section,  you will find that DH suffers must be very strict in order to prevent flare-ups which often flare without any obvious reason.  Stricter than most celiacs.  

Milk Duds are processed.  Were they cross contaminated?  Who knows?  Just susbscribe to the FDA and USDA alert sites and you will get daily reports of all kinds of foods that either are tainted with a bacteria or with a potential allergen like wheat or peanuts which does not appear on the product label.  Mistakes, though rare (or at least reported) do occur.  

You honestly could have reacted to any of the ingredients found in Milk Duds or maybe even picked up a case of food poisoning.  Those things are hard to digest especially if you are a newbie and your GI tract is still not healed.  When my celiac disease is active, I can not even digest gluten free safe foods for a few weeks without abdominal pain.  

How long have you been gluten free?  

As far as milk is concerned, I consume copious amounts of it daily and I am a healed celiac based on repeat biopsies.  I am fortunate that I am not genetically lactose intolerant and was able to add milk back into my diet after healing.  But some people (like a huge chunk of the world’s population) are naturally lactose intolerant (not to mention when you age, you can become lactose intolerant too).  

If you are new to celiac disease, please consider avoiding processed foods for a while and do not eat out until you are feeling better and that rash is gone! 

I hope you feel better soon.  

[will4318]

Hi everyone, 

Just an update, 

I have seen the consultant and he thinks it's coeliac, he is going to do a biopsy in the next week or two and if that's negative he wants to do a gene test. 

 

I will let you all know what happens 

Thanks 

Will 

[cyclinglady]

Keep us posted.  Inquiring minds want to know!  Seriously, you could help someone else in the future who has a similar situation.  

I hope you feel better soon.  

[will4318]

50 minutes ago, cyclinglady said:

Seriously, you could help someone else in the future who has a similar situation. 

Hi cyclinglady, 

Yep that's what I thought. 

Thanks, me too. 

 

Will 

 

 

[Posterboy]

On 10/15/2018 at 8:06 AM, Maureen Haley said:

Any ideas about breakouts with foods that are confirmed, in several reputable info places, that could cause a breakout?

Maureen and Cyclinglady,

Of the foods you listed. . .. I would focus on the Chocolate.

Chocolate has Tyramine in it and it could/can cause rashes that  might be confused for DH.

Sometimes Tyramine get's confused for/in high sulfite foods as triggers.

Here is a great overview article on this topic.

http://www.chicagotribune.com/lifestyles/health/sc-red-wine-headache-health-0608-20160525-story.html

you might also have trouble with headaches if it tyramine is causing you your trouble.

People who have trouble Tyramine might also have trouble with consuming cheeses.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738414/

As for the Milk causing/triggering your DH don't rule Adult onset dairy allergy.

While rare it does occur in the literature/research when you search it out.

I am including the research here in the hopes it might help you or someone else entitled

"Adult onset of cow's milk protein allergy with small‐intestinal mucosal IgE mast cells"

https://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.1996.tb04640.x

It is generally thought most of grow out of a Milk Allergy at approx. 3 years old.

But for some lucky one (I guess) we never do apparently.  (I speak for my friend on this board JMG).  He found out he was having trouble with dairy as an adult better never realized until about 6 months ago.

With delayed onset allergies it is often hard to tell if it (allergen) is effecting us because we might not associate it with our dairy consumption because it might happen a day or two latter.

See this WHFoods article about food allergens/sensitivies.  It is very long/exhaustive but it is very helpful if you have time to study it in more detail.

http://www.whfoods.com/genpage.php?pfriendly=1&tname=faq&dbid=30

I will quote some key points for your information.

Symptoms of Food Allergies

"The most common symptoms for food allergies include vomiting, diarrhea, blood in stools, eczema, hives, skin rashes, wheezing and a runny nose. Symptoms can vary depending upon a number of variables including age, the type of allergen (antigen), and the amount of food consumed. It may be difficult to associate the symptoms of an allergic reaction to a particular food because the response time can be highly variable. For example, an allergic response to eating fish will usually occur within minutes after consumption in the form of a rash, hives or asthma or a combination of these symptoms. However, the symptoms of an allergic reaction to cow's milk may be delayed for 24 to 48 hours after consuming the milk; these symptoms may also be low-grade and last for several days. If this does not make diagnosis difficult enough, reactions to foods made from cow's milk may also vary depending on how it was produced and the portion of the milk to which you are allergic. Delayed allergic reactions to foods are difficult to identify without eliminating the food from your diet for at least several weeks and slowly reintroducing it while taking note of any physical, emotional or mental changes as it is being reintroduced."

Here is their information on Tyramine's.

Tyramine

"Reactions to tyramine (an amino acid-like molecule) or phenylalanine (another amino acid-like molecule) can result from eating the following foods:

• Fermented cheeses
• Fermented
• Sausage
• Chocolate
• Sour Cream
• Red wine
• Avocado
• Beer
• Raspberries
• Yeast
• Picked Herring

Symptoms of tyramine intolerance can include urticaria (hives), angioedema (localized swelling due to fluid retention), migraines, wheezing, and even asthma. In fact, some researchers suggest that as many as 20 percent of migraines are caused by food intolerance or allergy, and tyramine intolerance is one of the most common of these toxic food responses."

Here is an old thread on tyramine and especially how it can trigger headaches.

https://www.celiac.com/forums/topic/95457-headache-culprit-is-tyramine/

I would also suggest your research a low histamine food diet.  Rashes/hives etc. can be triggered my disregulaton of histamine in the body.

The other thing in chocolate that might be causing your problems is Sulfites.

Here is a website dedicated to a Sulftie allergy.

http://www.allergy-details.com/sulfites/foods-contain-sulfites/

Chocolate bars are on their list of sulfite contaning foods but probably most noted in dried fruits and red wine.

Knitty Kitty on this board knows alot about a sulfite allergy.

I want to go back to the possible dairy allergy for a second as a possible trigger. . .because it has been established as connected to DH . . .it is just not well known.

Here is current research (as I said earlier) most dairy allergies are studied in children but it does occur in approx. 10 pct of the GP unless your of Asian descent where it is much more common.

https://www.ncbi.nlm.nih.gov/pubmed/29555204

quoting the new research from this year on children.

"When CMP (Cow's Milk Protein) was re-introduced, anti-tTG increased, and returned to normal after the CMP was withdrawn again."

and if adults can also (though rarely) it seem develop "Adult onset of cow's milk protein allergy with small‐intestinal mucosal IgE mast cells" (see research linked above) as the research shows  you should at least trial removing dairy from your diet if you haven't already and see if your DH doesn't come back when you re-introduce it.

It just takes 15 or 20 years for medical doctor' to incorporate new research/thinking into clinical practice.  And note the research on this happening in adults is 20+ years old and as far I know doctor's . . . are not aware of this.  I know I wasn't until recently and I research things alot of to help myself and my friends.

But I know you can't do what you don't know about.  So this is why I am trying to share what I learned so that other might be helped and this research might not  lay hidden another 20 years before doctor's and their Celiac/DH patients become aware of it.

And if it helps you come back on the board and let us know so it can help others too!

If it helps you it will/can help someone else! if they know it helped you then they will/can have hope it might help them too and why I share and research these things for others'. . . who don't know or don't have time to research this for themselves.

I hope this is helpful but it is not medical advice.

Good luck on your continued journey.

I know this is a lot of information to digest at one time but I hope at least some of if it helpful and you at least have a better idea of what in your chocolate could be causing your DH (idiopathic) as the doctor's say (of an unknown cause mild) DH symptom's.

Or at least it is not commonly known yet that Milk can also cause trigger (DH) in children and adults who have a Milk allergy undiagnosed. . .because we don't don't typically think  or associate it with adults like maybe we should if we are not of Asian descent.

Maureen if this doesn't help you you might want to start a thread in the DH section of the forum.

As always  2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[will4318]

Hi everyone, 

Had my biopsy done, they said it looked normal but have taken 4 biopsies from my Duodenum. 

They have told me to start a gluten free diet. 

Will let you know when I get the results. 

Will

[cyclinglady]

“Everything looks good.”  That is what my diagnosing GI said.  My biopsies revealed moderate to severe damage.  My new GI’s scope has a much stronger magnification.  

Keep us posted, but seriously trial the diet regardless of the outcome.  The small intestine is vast (larger than a tennis court) and damage can be spotty.  

[will4318]

1 hour ago, cyclinglady said:

trial the diet regardless of the outcome.  The small intestine is vast (larger than a tennis court) and damage can be spotty.  

That's pretty much what my GI said and he seems fairly sure its coeliac due to tests I have had to rule out crohns disease and that IBS doesn't explain my vitamin issues.

I think i might have gotten lucky with my GI compared to some of the things people had said on this forum.

[will4318]

Hi everyone,

Biopsies came back negative but they want me to stay gluten free until they have seen me in a weeks time. 

Im other news my folate has come back up but my iron is still down and my vitamin D is now very low. 

 

Will keep you updated 

[will4318]

Hi everyone, 

Just an update, since my last posting the doctors started looking at other causes so I was on and off perscibed vitamins (folate b12, iron and vitamin D) repeatedly but my levels wouldn't stay up. So eventually coeliac came back up. The "good news" is that they have now found the damage. 

I have been completely gluten-free for just a week and whislt I still have some stomach aches the other more graphic symptoms have disappeared, I can't actually remember a time when my stomach has been this good! 

Anyway that's its, I just wanted to post and update for anyone who might look at this in the future.