Open Access

7-day weighed food diaries suggest patients with hereditary hemorrhagic telangiectasia may spontaneously modify their diet to avoid nosebleed precipitants

  • Helen Finnamore1, 3,
  • B. Maneesha Silva2,
  • B. Mary Hickson4,
  • Kevin Whelan3 and
  • Claire L. Shovlin1, 5Email author
Orphanet Journal of Rare Diseases201712:60

https://doi.org/10.1186/s13023-017-0576-6

Received: 1 October 2016

Accepted: 20 January 2017

Published: 28 March 2017

Abstract

Hereditary hemorrhagic telangiectasia (HHT) poses substantial burdens due to nosebleeds and iron deficiency resulting from recurrent hemorrhagic iron losses. Recent studies by our group found surprising links between HHT nosebleeds and certain food groups. In this letter, we report 7-day weighed food diary assessments of an unselected group of 25 UK patients with HHT whose nosebleeds ranged from mild to severe (median epistaxis severity score 4.66, range 0.89– 9.11). The diaries provide evidence that food items most commonly reported to provoke nosebleeds were ingested by fewer HHT patients, compared to food items less commonly reported to provoke nosebleeds (chi-squared p <0.001).

Keywords

Anemia Epistaxis Fish oil Hemorrhage adjusted iron requirement (HAIR) Iron 7-day weighed food diary

Introduction

Nosebleeds (epistaxis) occur very frequently in patients with hereditary hemorrhagic telangiectasia (HHT) and significantly impact on quality of life. Typically, nosebleeds severity varies over time, and nosebleeds often come in clusters. Most HHT patients experience nosebleeds at least once a week, and in many series, more than a third experience them on a daily or near-daily basis [1, 2]. In one survey, 326/666 (49%) of unselected respondents with HHT had required specialist invasive treatments, often requiring multi-modality therapy [1]. Through under-replacement of hemorrhagic iron losses, nosebleeds commonly result in iron deficiency anemia, regular use of iron tablets, and in as many as 30% of cases, multiple iron infusions or blood transfusions [3].

Nosebleeds result from the presence of abnormal nasal vasculature, and are the usual primary outcome measure in clinical trials of new HHT therapeutic agents. In two large international surveys by our group, multiple dietary items were reported to exacerbate HHT nosebleeds [1, 2]. Here we report data that suggests some HHT patients may spontaneously modify their diet to avoid food items perceived to provoke nosebleeds.

Methods and results

In 2011, with ethical approval from the London Wandsworth Research Ethics Committee (11/H0803/8), and written informed consent obtained from all participants, an unselected group of 25 HHT patients measured their food intake using a 7-day weighed food diary [4]. Participants were encouraged to follow their normal diet, recording the time, the food or drink consumed, a description of the brand name, and the method of preparation, in addition to the weighed amount in grams, for each different item consumed. Nosebleeds were quantified using the epistaxis severity score which has a maximum score of 10 [5].

From 2012, with ethical approval from the NRES Committee East Midlands-Derby 1 Research Ethics Committee, and online informed consent obtained from all participants, we performed unbiased evaluations of nosebleeds by surveying HHT patients [1, 2]. Following spontaneous reports of dietary nosebleed precipitants [1], our subsequent survey [2] directed participants to 18 different food groups where they were offered tick boxes of i)“This is not part of my diet”, ii)“I have not noticed any difference”, iii)”Seem to bring on nosebleeds”, iv)“Seem to help nosebleeds. In total, 37/265 (14.0%) participants reported that chocolate seemed to bring on their nosebleeds, with strawberries (25/260, 9.6%) and citrus fruits (21/262, 8.0%) the next most commonly reported food groups (Table 1). These findings mirrored those of the earlier survey [1].
Table 1

Details of the 1,523 portions of food ingested by the 25 food diary study participants, and reports of nosebleed effects in the 2013 HHT Survey

 

2011 7-day weighed food diary

2013 HHT Survey on Nosebleeds

Total reports

Food item seemed to bring on nosebleeds

Food item seemed to help nosebleeds

Category

Number ingesting

Total Portions

Tertile of ingestion

Number ingesting

Number reporting

%

Number reporting

%

Sweets

6

21

1

259

18

6.95

0

0.00

Strawberries/other berries

10

24

1

260

25

9.62

5

1.92

Beans and lentils

11

16

1

258

2

0.78

4

1.55

Savory biscuits

13

21

1

238

5

2.10

0

0.00

Citrus fruits

13

48

1

262

21

8.02

2

0.76

Chocolate

14

29

1

265

37

13.96

1

0.38

Crisps

15

45

2

242

2

0.83

0

0.00

Bananas, melons

16

56

2

260

9

3.46

3

1.15

Sweet biscuits

19

59

2

243

7

2.88

0

0.00

Fast or frozen foods

21

57

2

240

9

3.75

2

0.83

Breakfast cereals

22

126

2

253

5

1.98

0

0.00

Cheese

22

66

2

263

17

6.46

0

0.00

Meat or fish

24

148

3

259

13

5.02

6

2.32

Green vegetables

24

122

3

268

6

2.24

10

3.73

Other vegetables

24

153

3

264

10

3.79

4

1.52

Bread

25

166

3

260

7

2.69

1

0.38

Potatoes, rice and pasta

25

84

3

262

5

1.91

0

0.00

Milk/yoghurt/butter

25

179

3

262

11

4.20

3

1.15

In the 7-day weighed food diary cohort, the epistaxis severity score ranged from 0.89 to 9.11 (median 4.66). When we evaluated the food items ingested by the 25 participants, we noted that the least frequently ingested foods comprised beans/lentils, chocolate, citrus fruits, savory biscuits, strawberries/other berries, and sweets (Table 1). Thus, the food items most commonly reported to precipitate nosebleeds by the HHT Survey respondents (chocolate, strawberries and citrus fruits) were ingested by fewer HHT-affected participants in the weighed food diary assessment (Table 1).

For statistical analyses, all of the foods in the respective tertile were pooled into least consumed, mid- and most consumed foods across all study participants. The least ingested tertile foods were reported to precipitate nosebleeds in 108/1542 cases (7.0%) compared to 49/1501 (3.2%) for the mid tertile and 52/1575 (3.3%) for the most ingested foods (p <0.001 by chi-squared test.)

Conclusion

This is clearly a small study that should be repeated in larger HHT cohorts, and is additionally unable to address potential impacts of portions sizes, food-nosebleed intervals, and other secondary questions that will need to be foci of future studies. Nonetheless, the current study does appear to provide evidence that HHT patients may modify their diet to avoid food items perceived to provoke nosebleeds. We recognise that diet is an important component of people’s lifestyle, and that suggesting restrictions may not be acceptable to many people with HHT. Dietary modification should be a matter for patient choice, and not over-emphasised by clinicians, unless this negatively impacts on nutrient intake. However if nosebleeds have significant impact on patients’ lifestyle and general health then there is an argument that nosebleed-related dietary advice could be part of clinical management. The current observations may offer acceptable opportunities for some people to better control nosebleeds, in addition to improving future HHT nosebleed clinical trial design.

Abbreviations

ESS: 

Epistaxis severity score

HAIR: 

Hemorrhage adjusted iron requirement

HHT: 

Hereditary hemorrhagic telangiectasia

Declarations

Acknowledgements

We thank the patients for their willing participation in these studies.

Funding

This study received support from Imperial College London's BSc Project Funds (for MS), King’s College London (for HF), and donations from families and friends of HHT patients. Dr Shovlin also acknowledges support from the NIHR Biomedical Research Centre Funding Scheme (Imperial BRC). The funders played no role in the design and conduct of the study; collection, management.

Availability of data and materials

The datasets from the current study are available from the corresponding author on reasonable request.

Authors’ contributions

HF contributed to study design, recruited patients for the 7-day weighed food diaries, performed data analysis and interpretation, and drafted methodological sections. MS performed data interpretation. MH contributed to study design, and advised on dietary concepts. KW contributed to study design, advised on dietary concepts and co-supervised HF. CLS conceived the study; participated in study design, supervised HF and MS, performed the statistical analysis; generated the Figures; and wrote the final manuscript. All authors read and approved the final manuscript.

Competing interests

The authors have no competing interests to declare.

Consent for publication

Not applicable.

Ethics approval and consent to participate

The 7 day weighed food diary study received ethical approval from the London Wandsworth Research Ethics Committee (11/H0803/8). All participants provided written informed consent. The HHT nosebleed survey received ethical approval from the NRES Committee East Midlands-Derby 1 Research Ethics Committee (12/EM/0073). All participants provided online informed consent.

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Authors’ Affiliations

(1)
National Heart and Lung Institute Cardiovascular Sciences, Imperial College London
(2)
Imperial College School of Medicine, Imperial College London
(3)
Diabetes and Nutritional Sciences Division, King’s College London
(4)
Nutrition and Dietetics, Plymouth University
(5)
Respiratory Medicine, Imperial College Healthcare NHS Trust

References

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Copyright

© The Author(s). 2017

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